major birth defects from population-based birth defects ... · for the 47 major birth defects....

Birth Defects Research (Part A) 106: S1-S177 (2016)

Major birth Defects from Population-based birth defects surveillance programs in the United States, 2009-2013

The current report includes state-specific data on the 47 major birth defects from 40 population-

based birth defects surveillance programs, as well as an accompanying directory. The directory

describes data collection status and contacts for state birth defects surveillance programs. Table 1

presents the NBDPN list of birth defects and their accompanying ICD-9-CM and CDC/BPA diagnostic

codes.

Methodology

In collaboration with the CDC, the NBDPN Data Committee issued a call for data in April 2016

for the 47 major birth defects. State programs were provided with a data dictionary and data table

creation tools in Excel and SAS for the reporting of major birth defects. All data were received by CDC

for data quality checks and formatting. Tables were generated and provided to state programs to allow

them to validate their data and approve the final data presentation.

Participating birth defects surveillance programs submitted case counts of the reportable birth

defects and live births occurring from January 1, 2009 through December 31, 2013. These cases were

stratified by U.S. Census maternal racial/ethnic groups: non-Hispanic white, non-Hispanic black,

Hispanic, non-Hispanic Asian/Pacific Islander, non-Hispanic American Indian/Alaska Native, and

other/unknown. Additionally, trisomy conditions (trisomy 21 [Down syndrome], trisomy 13, and

trisomy 18) and gastroschisis were stratified by six maternal age categories: less than 20 years, 20 to 24

years, 25 to 29 years, 30 to 34 years, 35 to 39 years, and 40+ years.

Data presentation

State-specific data from 40 population-based birth defects surveillance programs for 2009 to

2013 are included in the supplemental materials. The data are presented in two tables for each state. The

first table shows defect counts and prevalence per 10,000 live births by maternal racial/ethnic categories,

and the second table presents counts and prevalence for trisomies and gastroschisis by two maternal age

categories (less than 35 years, 35+ years). The prevalence is calculated by dividing the number of birth

defect cases for any pregnancy outcome by the total number of live births for the reported years and then

multiplying by 10,000 (Mason et al. 2005). The denominator used to calculate the prevalence for all

birth defects is total live births except for hypospadias, which is calculated using total male live births,

and Turner syndrome, which is calculated using total female live births. The NBDPN provided a data

STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY S1

Birth Defects Research (Part A) XX: S1-S177 (2016)


dictionary and attempted to obtain the data in a uniform manner; however, some variability can be

expected in the reported birth defects data by state programs, given differences in coding systems used

for case inclusion, case-finding methodology, and available data sources. State-specific notes and

clarification about the data, including methodological changes and probable/possible diagnoses, are

noted in the data tables. Additional information about each state program data collection methodology is

available in the accompanying program directory.

Acknowledgements

The NBDPN would like to acknowledge Philip Lupo, chair of the NBDPN Data Committee, as

well as Erin Stallings, Jennifer Isenburg, Cara Mai and Jennifer Liu at the Centers for Disease Control

and Prevention for cleaning, compiling, and formatting the data tables and directory. The state birth

defects surveillance programs that submitted data for this report: Arizona Birth Defects Monitoring

Program; Arkansas Reproductive Health Monitoring System; California Birth Defects Monitoring

Program; Colorado Responds To Children With Special Needs; Delaware Birth Defects Registry;

Florida Birth Defects Registry; Metropolitan Atlanta Congenital Defects Program; Hawaii Birth Defects

Program; Illinois Adverse Pregnancy Outcomes Reporting System; Iowa Registry for Congenital and

Inherited Disorders; Kansas Birth Defects Information System; Kentucky Birth Surveillance Registry;

Louisiana Birth Defects Monitoring Network; Maine CDC Birth Defects Program; Maryland Birth

Defects Reporting and Information System; Massachusetts Birth Defects Monitoring Program; Michigan

Birth Defects Registry; Minnesota Birth Defects Information System; Mississippi Birth Defects

Surveillance Registry; Missouri Birth Defects Surveillance System; Nebraska Birth Defect Registry;

Nevada Birth Outcomes Monitoring System; New Jersey Special Child Health Services Registry; New

Mexico Birth Defects Prevention and Surveillance System; New York State Congenital Malformations

Registry; North Carolina Birth Defects Monitoring Program; North Dakota Birth Defects Monitoring

System; Oklahoma Birth Defects Registry; Oregon Birth Anomalies Surveillance System; Puerto Rico

Birth Defects Surveillance and Prevention System; Rhode Island Birth Defects Program; South Carolina

Birth Defects Program; Tennessee Birth Defects Registry; Texas Birth Defects Epidemiology and

Surveillance Branch; Utah Birth Defect Network; Vermont Birth Information Network; Virginia

Congenital Anomalies and Reporting Education System; West Virginia Birth Defects Surveillance

System; Wisconsin Birth Defect Prevention and Surveillance System; and the U.S. Department of

Defense Birth and Infant Health Registry.




Table 1: National Birth Defects Prevention Network (NBDPN) List of Reported Birth Defects by Disease Classification Codes

Birth Defects

Disease Classification Codes

International Classification of Diseases, 9th Revision, Clinical

Modification (ICD-9-CM)

Centers for Disease Control and Prevention/British Pediatric Association Classification of

Diseases (CDC/BPA)Central Nervous System Anencephaly 740.0 – 740.1 740.00 – 740.10

Spina bifida without anencephaly 741.0, 741.9 without 740.0 - 740.1

741.00 – 741.99 without 740.00 – 740.10

Encephalocele 742.0 742.00 – 742.09 Holoprosencephaly 742.2 742.26 Eye Anophthalmia/microphthalmia 743.0, 743.1 743.00 – 743.10 Congenital cataract 743.30 – 743.34 743.32 Ear Anotia/microtia 744.01, 744.23 744.01, 744.21 Cardiovascular Common truncus (truncus arteriosus) 745.0 745.00

(excluding 745.01)

Transposition of the great arteries (TGA) 745.10, .12, .19 745.10 – 745.12, 745.18 – 745.19

dextro-Transposition of great arteries (d-TGA) – for CCHD screening* 745.10 745.10, 745.11,745.19

Tetralogy of Fallot 745.2 745.20 – 745.21, 747.31

Ventricular septal defect 745.4 745.40 – 745.49 (excluding 745.487, 745.498)

Atrial septal defect 745.5 745.51 – 745.59 Atrioventricular septal defect (endocardial cushion defect) 745.60, .61, .69 745.60 – 745.69, 745.487

Pulmonary valve atresia and stenosis 746.01, 746.02 746.00, 746.01 Pulmonary valve atresia – for CCHD screening* 746.01 746.00

Tricuspid valve atresia and stenosis 746.1 746.100, 746.106 (excluding 746.105)

Tricuspid valve atresia– for CCHD screening* 746.1 746.100

Ebstein anomaly 746.2 746.20 Aortic valve stenosis 746.3 746.30 Hypoplastic left heart syndrome 746.7 746.70 Coarctation of aorta 747.10 747.10 – 747.19 Total anomalous pulmonary venous connection 747.41 747.42

Single ventricle 745.3 745.3 Interrupted aortic arch 747.11 747.215 – 747.217 Double outlet right ventricle 745.11 745.13 – 745.15 Orofacial Cleft palate alone (without cleft lip) 749.0 749.00 – 749.09 Cleft lip alone (without cleft palate) 749.1 749.10 – 749.19 Cleft lip with cleft palate 749.20-749.25 749.20 – 749.29 Choanal atresia 748.0 748.00




Birth Defects

Disease Classification Codes

International Classification of Diseases, 9th Revision, Clinical

Modification (ICD-9-CM)

Centers for Disease Control and Prevention/British Pediatric Association Classification of

Diseases (CDC/BPA)Gastrointestinal Esophageal atresia/tracheoesophageal fistula 750.3 750.30 – 750.35

Rectal and large intestinal atresia/stenosis 751.2 751.20 – 751.24 Biliary atresia 751.61 751.65 Small intestinal atresia/stenosis 751.1 751.10 – 751.19 Genitourinary Renal agenesis/hypoplasia 753.0 753.00 – 753.01 Bladder exstrophy 753.5 753.50

Hypospadias 752.61 752.60 – 752.62 (excluding 752.61 and 752.621)

Congenital posterior urethral valves 753.6 753.60 Cloacal exstrophy 751.5 751.555 Musculoskeletal Gastroschisis 756.73 (as of 10/1/09) 756.71 Omphalocele 756.72 (as of 10/1/09) 756.70 Diaphragmatic hernia 756.6 756.610 – 756.617 Limb deficiencies (reduction defects) 755.2 – 755.4 755.20 – 755.49 Craniosynostosis No specific code 756.00 – 756.03

Clubfoot 754.51, 754.70 754.50, 754.73 (excluding 754.735)

Chromosomal Trisomy 13 758.1 758.10 – 758.19 Trisomy 21 (Down syndrome) 758.0 758.00 – 758.09 Trisomy 18 758.2 758.20 – 758.29 Turner syndrome 758.6 758.60 – 758.69 Deletion 22q11.2 758.32 758.37

CCHD: critical congenital heart defect.

* The primary targets for CCHD screening include 7 conditions: hypoplastic left heart syndrome, pulmonary atresia with intact septum, tetralogy of Fallot, total anomalous pulmonary venous connection, dextro-transposition of great arteries (d-TGA), tricuspid atresia, and truncus arteriosus. The NBDPN traditionally monitors all TGA, and both atresia and stenosis for pulmonary and tricuspid valve conditions; however, for CCHD screening reporting purpose, these conditions are also reported as d-TGA, pulmonary valve atresia, and tricuspid valve atresia.




ArizonaBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)ArizonaBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)

Maternal Race/Ethnicity

DefectWhite,Non-Hispanic

Black,Non-Hispanic Hispanic

Asian or PacificIslander,Non-Hispanic

AmericanIndian orAlaska Native,Non-Hispanic Total** Notes

Anencephalus 100.6

21.2

332.4

00.0

20.9

471.3

Anophthalmia/microphthalmia 161.0

10.6

161.1

21.5

31.3

381.1

Anotia/microtia 120.8

10.6

171.2

10.8

52.2

361.0

Aortic valve stenosis 261.7

31.8

302.1

10.8

62.7

661.9

Atrioventricular septal defect(Endocardial cushion defect)

212.7

67.2

233.5

11.5

43.6

553.2

1

Biliary atresia 40.3

10.6

50.4

21.5

20.9

150.4

Bladder exstrophy 40.3

00.0

10.1

00.0

00.0

50.1

Choanal atresia 140.9

31.8

130.9

10.8

00.0

330.9

Cleft lip alone 603.9

10.6

412.9

43.1

188.0

1243.5

Cleft lip with cleft palate 885.7

74.3

1057.5

64.6

2410.7

2366.7

Cleft palate alone 915.9

42.4

775.5

129.3

198.5

2035.8

Coarctation of the aorta 644.1

95.5

644.6

21.5

125.3

1514.3

Common truncus (truncus arteriosus) 50.3

00.0

50.4

00.0

20.9

120.3

Congenital cataract 70.5

21.2

100.7

10.8

10.4

220.6

Diaphragmatic hernia 322.1

21.2

372.6

10.8

52.2

802.3

Ebstein anomaly 110.7

00.0

141.0

10.8

41.8

310.9

Encephalocele 100.6

00.0

120.9

10.8

20.9

250.7

Esophageal atresia/tracheoesophagealfistula

402.6

42.4

292.1

21.5

62.7

822.3

Gastroschisis 764.9

137.9

1067.6

32.3

229.8

2276.5

Holoprosencephaly 30.8

00.0

61.8

00.0

00.0

91.1

Hypoplastic left heart syndrome 402.6

84.9

362.6

32.3

94.0

962.7

Interrupted aortic arch 10.3

00.0

20.6

00.0

00.0

30.4

3

Limb deficiencies (reduction defects) 412.7

106.1

382.7

10.8

94.0

1002.9

Omphalocele 382.5

21.2

221.6

43.1

20.9

681.9

Pulmonary valve atresia and stenosis 855.5

116.7

846.0

53.9

177.6

2065.9

Pulmonary valve atresia 392.5

63.7

392.8

32.3

62.7

962.7

Single ventricle 120.8

10.6

151.1

00.0

10.4

290.8

Spina bifida without anencephalus 533.4

53.1

493.5

43.1

135.8

1293.7

Tetralogy of Fallot 644.1

53.1

624.4

53.9

146.2

1544.4

Total anomalous pulmonary venousconnection

131.1

21.6

171.7

11.0

42.4

381.5



2

2


ArizonaBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)






Transposition of the great arteries (TGA) 543.5

84.9

644.6

32.3

104.5

1394.0

Dextro-transposition of great arteries(d-TGA)

332.1

10.6

382.7

21.5

31.3

772.2

Tricuspid valve atresia and stenosis 60.5

10.8

90.9

22.0

10.6

190.7

Trisomy 13 120.8

42.4

161.1

32.3

10.4

361.0

Trisomy 18 322.1

42.4

211.5

32.3

41.8

641.8

Trisomy 21 (Down syndrome) 17711.5

1710.4

20514.6

1410.8

3013.4

44912.8

Total live births 154265.

16382.

139948.

12941.

22437.

350113.

*Hypospadias prevalence per 10,000 male live births**Total includes unknown and other maternal race/ethnicity



3


ArizonaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2012 (Prevalence per 10,000 Live Births)ArizonaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2012 (Prevalence per 10,000 Live Births)

Maternal Age (years)

Defect Less than 35 35+ Total** NotesGastroschisis 219

7.281.7

2276.5

Trisomy 13 250.8

112.3

361.0

Trisomy 18 371.2

265.5

641.8


21044.2

44912.8


47514.

350113.

**Total includes unknown maternal age

Notes1.Data for this condition begin mid-year 2011.

General comments-Data does not include terminations.-Stillborn cases are included in this report if there is a fetal death certificate, regardless of fetal weight or gestational age.



2.Data for this condition begin in 2012.3.Data for this condition begin in 2010.


ArkansasBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)ArkansasBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)






Anencephalus 393.8

62.0

63.8

13.4

112.6

533.4


51.7

31.9

13.4

00.0

332.1


10.3

148.8

00.0

00.0

342.2


31.0

95.6

00.0

00.0

664.3

Atrial septal defect 36034.7

10335.1

6138.1

1758.3

112.6

59638.8


817.8

248.2

95.6

413.7

00.0

1207.8


00.0

21.3

13.4

00.0

110.7


10.3

10.6

00.0

00.0

50.3


20.7

00.0

00.0

00.0

60.4


51.7

42.5

00.0

112.6

563.6


124.1

127.5

26.9

00.0

1157.5


113.8

95.6

13.4

00.0

1087.0

Cloacal exstrophy 10.1

20.7

00.0

00.0

00.0

30.2

Clubfoot 21520.7

3511.9

3119.4

26.9

112.6

29018.9


113.8

95.6

00.0

00.0

1207.8


10.3

21.3

13.4

00.0

140.9


82.7

42.5

310.3

00.0

573.7

Congenital posterior urethral valves 171.6

93.1

21.3

00.0

00.0

302.0

Craniosynostosis 716.8

62.0

106.3

00.0

00.0

1006.5

Deletion 22q11.2 80.8

10.3

21.3

00.0

00.0

130.8


103.4

63.8

00.0

112.6

603.9

Double outlet right ventricle 222.1

124.1

31.9

13.4

00.0

382.5


00.0

53.1

00.0

00.0

151.0

Encephalocele 101.0

93.1

10.6

13.4

00.0

231.5


333.2

72.4

21.3

00.0

00.0

442.9

Gastroschisis 939.0

144.8

138.1

26.9

112.6

1238.0


51.7

10.6

13.4

112.6

342.2


72.4

10.6

00.0

00.0

412.7

Hypospadias* 53399.9

11577.2

2125.7

1067.9

123.9

72892.3


31.0

10.6

13.4

00.0

120.8




ArkansasBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)







248.2

106.3

13.4

225.3

1046.8

Omphalocele 272.6

124.1

42.5

00.0

00.0

432.8


4816.4

2415.0

827.4

112.6

25116.3


41.4

31.9

00.0

00.0

151.0

Rectal and large intestinal atresia/stenosis 393.8

93.1

53.1

26.9

00.0

603.9

Renal agenesis/hypoplasia 252.4

51.7

85.0

00.0

00.0

392.5


31.0

21.3

00.0

00.0

90.6

Small intestinal atresia/stenosis 292.8

82.7

85.0

13.4

00.0

533.4


82.7

127.5

26.9

00.0

664.3


113.8

74.4

13.4

112.6

724.7


101.0

41.4

21.3

13.4

00.0

211.4


103.4

42.5

413.7

00.0

704.6


282.7

41.4

31.9

310.3

00.0

402.6


31.0

21.3

13.4

00.0

120.8

Tricuspid valve atresia 60.6

31.0

21.3

13.4

00.0

120.8

Trisomy 13 111.1

51.7

21.3

00.0

00.0

181.2

Trisomy 18 302.9

72.4

85.0

13.4

00.0

473.1


289.6

2314.4

310.3

00.0

19012.4

Turner syndrome† 163.2

00.0

33.8

00.0

00.0

192.5

Ventricular septal defect 65062.7

12342.0

12678.8

2585.8

225.3

99965.0

Total live births § 103721.

29313.

15996.

2915.

792.

153792.

Male live births 53376.

14890.

8187.

1472.

418.

78855.

Female live births 50342.

14421.

7808.

1443.

374.

74931.

*Hypospadias prevalence per 10,000 male live births†Turner syndrome prevalence per 10,000 female live births**Total includes unknown and other maternal race/ethnicity§Total live births includes unknown gender




ArkansasTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2012 (Prevalence per 10,000 Live Births)ArkansasTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2012 (Prevalence per 10,000 Live Births)



8.621.6

1238.0

Trisomy 13 141.0

43.2

181.2

Trisomy 18 292.1

1814.4

473.1


8164.7

19012.4


12513.

153792.


General comments-Data for 2013 are provisional.




CaliforniaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)CaliforniaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus <5.

00.0

462.3

<5.

00.0

942.9


<5.

191.0

<5.

00.0

361.1


<5.

904.6

<5.

00.0

1113.4


<5.

321.6

<5.

<5.

581.8


159.6

22611.5

228.5

00.0

36211.1

1


374.5

95.8

773.9

103.9

<5.

1434.4

Biliary atresia <5.

<5.

80.4

<5.

00.0

170.5


<5.

00.0

<5.

00.0

<5.

Choanal atresia <5.

00.0

<5.

00.0

00.0

80.2


<5.

472.4

<5.

00.0

962.9

2


<5.

1296.6

72.7

<5.

1895.8

2


<5.

683.5

<5.

<5.

1153.5

2, 3

Cloacal exstrophy <5.

00.0

00.0

00.0

00.0

<5.


74.5

1015.1

51.9

00.0

1735.3

Common truncus (truncus arteriosus) <5.

00.0

50.3

00.0

00.0

100.3


<5.

191.0

<5.

00.0

391.2


00.0

753.8

<5.

00.0

1183.6


<5.

402.0

62.3

00.0

752.3


<5.

442.2

62.3

<5.

722.2


00.0

120.6

<5.

00.0

220.7

Encephalocele <5.

00.0

160.8

<5.

<5.

260.8


202.4

<5.

351.8

<5.

00.0

631.9

4

Gastroschisis 465.5

<5.

1145.8

124.6

<5.

2026.2

Holoprosencephaly <5.

<5.

241.2

00.0

00.0

391.2


<5.

361.8

<5.

00.0

782.4

Hypospadias* 7417.3

67.6

717.1

<5.

<5.

16810.1

5

Interrupted aortic arch <5.

00.0

<5.

00.0

00.0

80.2


<5.

572.9

<5.

00.0

942.9

Omphalocele 111.3

<5.

251.3

00.0

<5.

521.6


<5.

311.6

51.9

<5.

491.5




CaliforniaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







<5.

693.5

<5.

00.0

1173.6

6

Renal agenesis/hypoplasia <5.

00.0

191.0

<5.

00.0

270.8

7


<5.

170.9

<5.

00.0

250.8


74.5

944.8

<5.

<5.

1374.2


<5.

814.1

<5.

<5.

1304.0


<5.

613.1

<5.

00.0

1023.1


121.4

<5.

432.2

<5.

<5.

642.0


182.2

<5.

371.9

<5.

00.0

631.9


00.0

130.7

<5.

00.0

210.6

Trisomy 13 60.7

<5.

170.9

00.0

<5.

441.3

Trisomy 18 192.3

<5.

452.3

<5.

00.0

1183.6


2214.1

30215.4

166.2

00.0

47014.4


15608.

196676.

25899.

2032.

326993.


7855.

99891.

13283.

1018.

166645.





CaliforniaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)CaliforniaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)


Defect Less than 35 35+ Total** NotesTrisomy 13 21

0.792.3

441.3

Trisomy 18 381.3

389.8

1183.6


23460.1

47014.4


38918.

326993.


Notes1.Data for this condition include only cases confirmed by physician review or echo or cath or surgery or autopsy. If the defect is a component of anothermajor heart malformation it is not counted.2.Data for this condition exclude cases where holoprosencephaly is present.3.Data for this condition do not include submucous cleft and bifid uvula.4.Data for this condition do not include isolated tracheoesophageal fistula.5.Data for this condition include only 2nd and 3rd degree cases.6.Data for this condition do not include anal stenosis.7.Data for this condition do not include unilateral renal agenesis/hypoplasia.

General comments-<5 indicates cell size suppressed to protect confidentiality or to indicate case count <5.-Cases with single gene disorders are not included in this report. Cases with chromosomal defects other than trisomy 13, 18 and 21 are not included inthis report.-Stillbirths greater than or equal to 20 weeks are included for all defect types.-Terminations are included for all gestational ages.




ColoradoBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)ColoradoBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 221.1

53.5

161.7

10.9

14.4

501.5


32.1

232.4

00.0

14.4

601.8


64.2

464.9

43.5

14.4

932.8


42.8

343.6

21.8

00.0

1073.2


266187.2

1302137.9

162142.1

36157.7

4470134.0


783.8

128.4

384.0

43.5

28.8

1504.5


10.7

131.4

00.0

00.0

471.4


00.0

30.3

00.0

00.0

130.4


32.1

192.0

00.0

00.0

732.2


53.5

475.0

21.8

00.0

1454.3


85.6

9810.4

76.1

313.1

3219.6


85.6

687.2

76.1

313.1

2828.5


139.2

788.3

88.7

28.8

2567.7

Clubfoot 36718.0

1510.6

18019.1

1815.8

730.7

62618.8


1812.7

778.2

43.5

00.0

3049.1


10.7

121.3

00.0

14.4

331.0


21.4

222.3

21.8

14.4

752.2


85.6

192.0

32.6

00.0

922.8


42.8

151.6

00.0

00.0

531.6


53.5

232.4

10.9

00.0

802.4


42.8

192.0

32.6

00.0

571.7


00.0

80.8

10.9

00.0

421.3

Encephalocele 130.6

32.1

141.5

21.8

00.0

361.1


964.7

53.5

424.4

32.6

14.4

1574.7

Gastroschisis 773.8

42.8

535.6

32.6

28.8

1524.6


10.7

151.6

10.9

00.0

331.0


32.1

283.0

00.0

00.0

942.8


108148.7

36174.6

4374.8

18151.5

2051119.9


53.5

60.6

00.0

00.0

331.0


64.2

515.4

10.9

00.0

1624.9




ColoradoBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 391.9

32.1

222.3

10.9

14.4

802.4


139.2

646.8

87.0

313.1

2286.8


107.0

212.2

21.8

00.0

742.2


149.9

464.9

108.8

313.1

1945.8


1510.6

485.1

54.4

313.1

2026.1


10.7

80.8

21.8

14.4

381.1


74.9

697.3

65.3

313.1

1985.9


21.4

404.2

10.9

14.4

1263.8


64.2

363.8

43.5

14.4

1203.6


130.6

10.7

171.8

10.9

00.0

331.0


42.8

192.0

54.4

00.0

802.4


442.2

42.8

202.1

54.4

00.0

752.2


64.2

111.2

10.9

00.0

481.4


64.2

111.2

10.9

00.0

471.4

Trisomy 13 190.9

42.8

151.6

21.8

00.0

802.4

Trisomy 18 381.9

64.2

283.0

108.8

00.0

1825.5


3222.5

18319.4

1815.8

417.5

79623.9


22.9

214.6

35.3

00.0

593.6


9164.1

55058.2

5649.1

1983.2

180254.0


14207.

94439.

11404.

2283.

333572.


7265.

48399.

5749.

1188.

171088.


6940.

46038.

5654.

1095.

162475.





ColoradoTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)ColoradoTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.040.7

1524.6

Trisomy 13 271.0

132.3

802.4

Trisomy 18 471.7

366.3

1825.5


26546.3

79623.9


57178.

333572.





DelawareBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)DelawareBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)






Anencephalus 52.0

10.8

23.5

00.0

00.0

81.8


32.5

47.0

00.0

00.0

132.9


43.3

610.5

14.7

00.0

235.1


21.7

11.7

00.0

00.0

92.0


2520.8

2340.1

314.0

00.0

12127.0

1


166.5

86.6

35.2

00.0

00.0

276.0


21.7

00.0

00.0

00.0

30.7


00.0

00.0

00.0

00.0

00.0


43.3

23.5

00.0

00.0

92.0


21.7

11.7

14.7

00.0

102.2


54.2

712.2

14.7

00.0

286.2


65.0

47.0

00.0

00.0

276.0

2


00.0

00.0

00.0

00.0

10.2

Clubfoot 3715.1

1411.6

1119.2

418.6

00.0

6614.7


21.7

712.2

29.3

00.0

327.1

3


00.0

11.7

00.0

00.0

20.4


32.5

35.2

14.7

00.0

173.8


43.3

00.0

14.7

00.0

81.8

4


54.2

58.7

00.0

00.0

265.8


21.7

00.0

00.0

00.0

40.9


00.0

11.7

14.7

00.0

71.6


10.8

35.2

00.0

00.0

61.3


11.1

00.0

00.0

00.0

30.9

Encephalocele 10.4

21.7

23.5

00.0

00.0

51.1


20.8

10.8

23.5

00.0

00.0

51.1

Gastroschisis 197.7

1210.0

35.2

00.0

00.0

347.6


32.5

23.5

00.0

00.0

71.6


54.2

610.5

00.0

1119.0

224.9


4573.4

1344.3

1090.3

00.0

20087.4


1310.8

47.0

29.3

00.0

327.1

5




DelawareBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)






Omphalocele 31.2

43.3

23.5

00.0

00.0

92.0


2117.4

1017.4

00.0

1119.0

6314.0

6


43.3

47.0

00.0

00.0

184.0


10.8

23.5

00.0

00.0

153.3


54.2

58.7

00.0

00.0

327.1


00.0

11.7

00.0

00.0

51.1


43.3

35.2

00.0

00.0

143.1


10.8

00.0

00.0

00.0

71.6

7


32.5

11.7

314.0

00.0

143.1

8


42.2

00.0

24.6

00.0

00.0

61.8


21.7

35.2

14.7

00.0

143.1


62.4

21.7

23.5

14.7

00.0

112.5


75.8

11.7

00.0

00.0

122.7

Trisomy 13 41.6

10.8

23.5

14.7

00.0

81.8

Trisomy 18 114.5

32.5

47.0

14.7

00.0

194.2


1210.0

58.7

523.3

00.0

5612.5


00.0

27.1

00.0

00.0

94.1


7965.6

5697.6

1883.7

00.0

36481.1

9


12039.

5736.

2150.

84.

44869.


6129.

2935.

1108.

43.

22876.


5910.

2801.

1042.

41.

21993.

*Hypospadias prevalence per 10,000 male live births†Turner syndrome prevalence per 10,000 female live births**Total includes unknown and other maternal race/ethnicity




DelawareTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2012 (Prevalence per 10,000 Live Births)DelawareTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2012 (Prevalence per 10,000 Live Births)



8.611.6

347.6

Trisomy 13 61.6

23.2

81.8

Trisomy 18 82.1

1117.4

194.2


2844.4

5612.5


6307.

44869.


Notes1.Data for this condition include atrial septal fenestrations. Data exclude atrial septal defects that self-close (not present after a month), which areconsidered patent foramen ovales.2.Data for this condition include Pierre Robin anomalies with cleft palate.3.Data for this condition include interrupted aortic arch.4.Data for this condition limited to cases where surgical intervention is required.5.Data for this condition include complex hand anomalies, adactyly, and syndactyly.6.Data for this condition exclude peripheral, branch, trivial, or limited cases.7.Data for this condition exclude spina bifida occulta.8.Data for this condition include ventricular septal defect with overriding aorta.9.Data for this condition include probable cases if the defect was found prenatally and the fetus died without a confirmatory autopsy.

General comments-All chromosomal defects require a cytogenetics report.-All heart defects require an echocardiogram report. Trivial or limited defects are excluded. State did not perform CCHD screening in 2009 and 2010.-Fetal deaths (including terminations) are included if the fetus weighed 350 grams or greater or 20 weeks or more gestation. State does not distinguishspontaneous terminations from elective terminations - stillbirths, miscarriages, and terminations are reported together.




FloridaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)FloridaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 390.8

210.9

190.6

00.0

00.0

800.7


241.0

371.2

<5.

00.0

1041.0


90.4

451.5

72.2

00.0

920.9


170.7

321.1

<5.

<5.

1311.2


3079128.8

3995134.8

28489.9

23155.3

12581117.7


2104.4

1195.0

1003.4

165.1

<5.

4604.3

1


371.5

170.6

<5.

00.0

970.9


60.3

50.2

00.0

00.0

230.2


351.5

571.9

51.6

<5.

1861.7


351.5

521.8

<5.

00.0

2262.1


813.4

1344.5

185.7

<5.

5244.9


984.1

1434.8

206.3

00.0

5925.5


1636.8

2036.8

144.4

<5.

7146.7

Clubfoot 76416.1

24810.4

36612.3

3912.3

<5.

145113.6


1536.4

1776.0

196.0

<5.

7607.1


200.8

180.6

<5.

00.0

790.7


321.3

311.0

<5.

00.0

1531.4


602.5

270.9

<5.

00.0

1591.5


50.2

70.2

00.0

00.0

330.3


793.3

893.0

72.2

<5.

3523.3


652.7

732.5

92.8

<5.

2702.5


120.5

130.4

<5.

<5.

670.6

Encephalocele 350.7

321.3

240.8

<5.

00.0

940.9


1232.6

532.2

632.1

51.6

<5.

2502.3

Gastroschisis 3046.4

672.8

1304.4

113.5

<5.

5224.9

2


1325.5

1304.4

165.1

00.0

5054.7


954.0

712.4

82.5

00.0

3373.2


85970.6

83655.2

8954.7

<5.

404173.9


150.6

220.7

<5.

00.0

680.6


893.7

983.3

154.7

<5.

3993.7




FloridaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 992.1

733.1

391.3

<5.

00.0

2172.0

2


32013.4

2909.8

237.3

00.0

106610.0


451.9

511.7

<5.

00.0

1701.6


1195.0

1414.8

72.2

<5.

4714.4


1415.9

1454.9

113.5

<5.

5825.4


472.0

371.2

61.9

00.0

1451.4


1295.4

1394.7

227.0

00.0

5525.2


542.3

812.7

103.2

00.0

3152.9


1315.5

1184.0

165.1

<5.

5435.1


390.8

331.4

291.0

<5.

00.0

1061.0


421.8

592.0

<5.

<5.

2772.6


1372.9

341.4

521.8

<5.

<5.

2362.2


381.6

250.8

<5.

00.0

1141.1

3

Trisomy 13 511.1

331.4

230.8

00.0

00.0

1081.0

Trisomy 18 821.7

652.7

571.9

61.9

00.0

2192.0


30312.7

41313.9

5316.8

<5.

145713.6


141.2

241.7

00.0

00.0

731.4


136557.1

208870.4

18057.0

960.8

680563.7

4


238974.

296401.

31592.

1481.

1068594.


121602.

151482.

16279.

776.

546952.


117366.

144916.

15312.

705.

521627.

*Hypospadias prevalence per 10,000 male live births†Turner syndrome prevalence per 10,000 female live births. Excludes male phenotype.**Total includes unknown and other maternal race/ethnicity§Total live births includes unknown gender




FloridaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)FloridaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.6140.9

5224.9

2

Trisomy 13 710.8

372.3

1081.0

Trisomy 18 1181.3

1016.2

2192.0


71644.3

145713.6


161778.

1068594.


Notes1.Data for this condition include canal type atrioventricular septal defect.2.Data for this condition may differ from previous reports due to coding system changes.3.Data for this condition include congenital tricuspid stenosis.4.Data for this condition include probable cases.




Georgia (Metropolitan Atlanta Congenital Defects Program)Birth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)Georgia (Metropolitan Atlanta Congenital Defects Program)Birth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 152.5

212.4

153.3

00.0

00.0

653.0


111.3

30.7

21.4

00.0

291.3


101.1

204.3

32.0

00.0

462.1


50.6

92.0

00.0

00.0

311.4


13615.5

5111.1

138.8

00.0

32314.7


376.1

657.4

173.7

32.0

167.6

1446.5


30.3

10.2

00.0

167.6

120.5


20.2

00.0

00.0

00.0

60.3


91.0

30.7

00.0

00.0

180.8


222.5

102.2

106.8

00.0

713.2


313.5

245.2

128.1

00.0

1165.3


374.2

235.0

106.8

00.0

1115.0


10.1

00.0

10.7

00.0

30.1

Clubfoot 9315.3

13415.3

6113.2

149.5

167.6

33715.3


414.7

245.2

53.4

00.0

1295.9


50.6

20.4

21.4

00.0

140.6


192.2

102.2

21.4

00.0

432.0


202.3

112.4

21.4

00.0

502.3


202.3

102.2

10.7

167.6

833.8


70.8

20.4

00.0

00.0

200.9


242.7

163.5

21.4

00.0

753.4


202.3

112.4

32.0

00.0

512.3


40.5

40.9

21.4

00.0

110.5

Encephalocele 20.3

70.8

40.9

32.0

167.6

251.1


213.4

182.1

71.5

00.0

00.0

512.3

Gastroschisis 233.8

283.2

224.8

32.0

00.0

863.9


202.3

92.0

53.4

00.0

622.8


202.3

71.5

64.1

00.0

602.7


30568.4

7130.2

2432.1

3411.0

72764.7


30.3

00.0

00.0

00.0

110.5




Georgia (Metropolitan Atlanta Congenital Defects Program)Birth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







445.0

204.3

10.7

00.0

1004.5

Omphalocele 183.0

354.0

92.0

32.0

167.6

843.8


677.7

316.7

85.4

167.6

1818.2


222.5

132.8

21.4

00.0

612.8


263.0

265.6

74.7

00.0

974.4


627.1

204.3

106.8

167.6

1607.3


111.3

92.0

21.4

00.0

301.4


333.8

132.8

42.7

00.0

803.6


293.3

224.8

21.4

00.0

944.3


374.2

81.7

64.1

00.0

1034.7


61.0

60.7

92.0

53.4

00.0

291.3


242.7

132.8

00.0

00.0

743.4


284.6

182.1

71.5

00.0

00.0

592.7


161.8

92.0

32.0

00.0

472.1


60.7

30.7

21.4

00.0

200.9

Trisomy 13 172.8

222.5

40.9

10.7

00.0

542.5

Trisomy 18 416.7

384.3

143.0

64.1

167.6

1255.7


12714.5

9220.0

2214.9

167.6

45920.9


204.7

20.9

56.9

00.0

514.7


36942.2

24553.2

5235.3

5337.8

119254.2


87532.

46079.

14749.

148.

220109.


44578.

23497.

7473.

73.

112425.


42950.

22582.

7275.

75.

107678.





Georgia (Metropolitan Atlanta Congenital Defects Program)Trisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)Georgia (Metropolitan Atlanta Congenital Defects Program)Trisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



4.451.1

863.9

Trisomy 13 331.9

214.5

542.5

Trisomy 18 412.4

7917.0

1255.7


23750.9

45920.9


46535.

220109.


General comments-Cases for which the date of delivery was unknown are included in the year of their last prenatal test.-Data include pregnancies with a prenatal diagnosis at any gestational age for which the outcome could not be documented from available data sources.-Elective terminations include all gestational ages.-Live births include gestational ages greater than or equal to 20 weeks.-Prior to 2012 data include 5 counties. Data for 2012-2013 include 3 of the 5 counties.-Stillbirths include gestational ages greater than or equal to 20 weeks.




HawaiiBirth Defects Counts and Prevalence 2012 (Prevalence per 10,000 Live Births)HawaiiBirth Defects Counts and Prevalence 2012 (Prevalence per 10,000 Live Births)






Anencephalus 24.7

00.0

00.0

10.7

00.0

42.1


00.0

00.0

00.0

00.0

10.5


00.0

4134.2

1813.3

00.0

3518.5


12.3

00.0

133.6

32.2

00.0

52.6


00.0

00.0

21.5

00.0

31.6


00.0

00.0

00.0

00.0

10.5


00.0

00.0

00.0

00.0

10.5


00.0

267.1

85.9

00.0

147.4


00.0

00.0

75.2

00.0

94.7


00.0

00.0

43.0

00.0

73.7


00.0

00.0

32.2

00.0

42.1


00.0

00.0

10.7

00.0

10.5

Encephalocele 00.0

00.0

00.0

21.5

00.0

21.1


12.3

00.0

00.0

32.2

00.0

52.6

Gastroschisis 24.7

00.0

00.0

96.7

00.0

126.3


00.0

00.0

21.5

00.0

31.6

Hypospadias* 627.6

00.0

2123.5

4057.8

00.0

5456.0

Omphalocele 00.0

00.0

133.6

32.2

00.0

42.1


00.0

133.6

53.7

00.0

126.3


00.0

00.0

21.5

00.0

21.1


00.0

00.0

85.9

00.0

126.3


00.0

00.0

64.4

00.0

84.2


00.0

00.0

10.7

00.0

10.5


00.0

00.0

10.7

00.0

21.1


00.0

00.0

00.0

21.5

00.0

21.1


120.0

133.6

64.4

00.0

84.2


00.0

133.6

32.2

00.0

42.1


00.0

133.6

32.2

00.0

42.1

Trisomy 13 00.0

00.0

00.0

21.5

00.0

21.1

Trisomy 18 37.0

00.0

133.6

64.4

00.0

157.9




HawaiiBirth Defects Counts and Prevalence 2012 (Prevalence per 10,000 Live Births)







00.0

267.1

1410.3

00.0

2915.3


00.0

00.0

11.5

00.0

22.2


00.0

4134.2

2921.4

00.0

5026.4


501.

298.

13532.

237.

18965.


251.

162.

6918.

113.

9645.


250.

136.

6614.

124.

9263.





HawaiiTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2012 (Prevalence per 10,000 Live Births)HawaiiTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2012 (Prevalence per 10,000 Live Births)



7.700.0

126.3

Trisomy 13 10.6

13.0

21.1

Trisomy 18 85.2

720.7

157.9


1647.3

2915.3


3382.

18965.


General comments-Fetal deaths are defined as baby born dead (without heart rate or respiration) during or after 18th gestation week; includes babies that died duringchildbirth.-Terminations limited to 20 weeks gestation and 350 gms.




IllinoisBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)IllinoisBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 551.3

151.1

462.6

30.6

00.0

1221.5


191.4

321.8

51.0

00.0

1181.5


90.6

734.1

132.7

00.0

1491.9


80.6

281.6

40.8

00.0

981.2


40429.0

49027.7

13227.2

746.6

214926.7


2235.2

896.4

824.6

132.7

00.0

4085.1

1


60.4

50.3

20.4

00.0

180.2


20.1

50.3

10.2

00.0

230.3


171.2

191.1

40.8

00.0

931.2


423.0

543.0

183.7

213.3

2893.6


493.5

1196.7

316.4

16.7

3944.9


553.9

1015.7

214.3

00.0

4295.3


30.2

10.1

10.2

00.0

100.1

Clubfoot 2876.6

715.1

1327.5

193.9

00.0

5116.4


392.8

854.8

142.9

16.7

2983.7


70.5

120.7

10.2

00.0

500.6


201.4

70.4

20.4

00.0

570.7


161.1

90.5

10.2

00.0

490.6


80.6

211.2

10.2

00.0

650.8


181.3

120.7

20.4

00.0

670.8


322.3

372.1

102.1

16.7

2052.6


271.9

362.0

122.5

16.7

1341.7


30.2

160.9

20.4

00.0

460.6

Encephalocele 190.4

141.0

271.5

40.8

00.0

650.8


1132.6

251.8

482.7

91.9

00.0

1952.4


634.5

915.1

20.4

00.0

3133.9


90.6

251.4

00.0

16.7

700.9


342.4

402.3

61.2

16.7

1531.9


36251.0

25227.9

11144.5

792.1

217652.9


151.1

60.3

00.0

00.0

420.5




IllinoisBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







805.7

925.2

173.5

00.0

4005.0

Omphalocele 872.0

322.3

241.4

61.2

16.7

1501.9


674.8

683.8

122.5

00.0

2773.4


141.0

191.1

30.6

00.0

640.8


543.9

683.8

153.1

320.0

2993.7


846.0

1055.9

316.4

00.0

4595.7


90.6

30.2

20.4

00.0

300.4


292.1

522.9

91.9

16.7

1692.1


342.4

643.6

112.3

00.0

2513.1


493.5

653.7

224.5

213.3

2673.3


250.6

80.6

201.1

40.8

00.0

570.7


261.9

502.8

91.9

00.0

1902.4


872.0

251.8

392.2

81.6

00.0

1592.0


362.6

583.3

51.0

16.7

1952.4

2


90.6

150.8

10.2

00.0

470.6

3

Trisomy 13 521.2

171.2

251.4

40.8

16.7

1011.3

Trisomy 18 1002.3

292.1

623.5

61.2

16.7

2062.6


1279.1

33518.9

438.9

426.6

106613.3


91.3

192.2

10.4

00.0

711.8


47333.9

83647.2

18538.1

16106.5

337542.0

4


139374.

177101.

48572.

1502.

803766.


70995.

90233.

24955.

760.

411565.


68371.

86861.

23617.

742.

392177.





IllinoisTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)IllinoisTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



4.490.7

3133.9

Trisomy 13 701.0

251.9

1011.3

Trisomy 18 1221.8

513.9

2062.6


54742.0

106613.3


130184.

803766.


Notes1.Data for this condition include inlet ventricular septal defects including common atrioventricular canal type ventricular septal defect.2.Data for this condition include tricuspid stenosis or hypoplasia.3.Data for this condition exclude tricuspid stenosis or hypoplasia.4.Data for this condition exclude probable cases, and inlet ventricular septal defects including common atrioventricular canal type ventricular septaldefects.

General comments-Data for all conditions include live births from birth to age 2 years and fetal deaths (these include stillbirths of 20 weeks gestation or more, andmiscarriages where the families chose to hold funerals).




IowaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)IowaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 422.6

33.4

53.2

11.7

00.0

522.7


00.0

42.6

11.7

111.4

331.7


11.1

106.4

11.7

00.0

422.2


11.1

31.9

23.4

00.0

542.8


3943.9

4931.2

1118.5

00.0

60531.2


935.8

1112.4

138.3

46.7

00.0

1216.2


11.1

10.6

00.0

00.0

90.5


00.0

00.0

00.0

00.0

70.4


00.0

00.0

00.0

00.0

281.4

1


44.5

63.8

23.4

00.0

713.7


44.5

106.4

58.4

00.0

1115.7


44.5

95.7

58.4

00.0

1397.2


00.0

10.6

00.0

00.0

30.2

Clubfoot 26916.7

1213.5

2616.6

1118.5

111.4

32016.5


22.3

106.4

11.7

00.0

1095.6


00.0

10.6

00.0

00.0

70.4


22.3

42.6

11.7

222.7

743.8


11.1

00.0

23.4

111.4

231.2


44.5

127.7

46.7

00.0

1397.2


11.1

10.6

00.0

00.0

241.2


33.4

42.6

23.4

00.0

552.8


66.8

63.8

11.7

00.0

462.4


11.1

00.0

11.7

00.0

150.8

Encephalocele 161.0

11.1

00.0

00.0

00.0

170.9


533.3

11.1

21.3

11.7

00.0

572.9

Gastroschisis 905.6

89.0

1811.5

11.7

111.4

1206.2


44.5

31.9

00.0

00.0

331.7


55.6

63.8

23.4

00.0

552.8


2146.0

2633.3

826.1

00.0

57758.3


00.0

00.0

00.0

00.0

100.5




IowaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







44.5

127.7

58.4

00.0

1176.0

2

Omphalocele 352.2

33.4

63.8

11.7

00.0

482.5


1516.9

159.6

1118.5

00.0

25813.3


11.1

21.3

00.0

00.0

221.1


55.6

148.9

11.7

00.0

874.5


44.5

74.5

58.4

00.0

1085.6


33.4

10.6

00.0

00.0

120.6


33.4

106.4

11.7

00.0

693.6


33.4

159.6

00.0

00.0

804.1


44.5

42.6

35.0

111.4

743.8


130.8

00.0

42.6

11.7

00.0

180.9


44.5

63.8

35.0

00.0

583.0


392.4

33.4

53.2

35.0

00.0

502.6


33.4

42.6

00.0

111.4

422.2


11.1

10.6

00.0

00.0

60.3

Trisomy 13 241.5

22.3

21.3

00.0

00.0

281.4

Trisomy 18 503.1

33.4

42.6

35.0

00.0

623.2


1213.5

3019.1

711.8

00.0

26513.7


12.3

33.8

00.0

00.0

495.2


3842.8

8352.9

2338.6

334.1

105354.3


8875.

15681.

5953.

880.

194062.


4562.

7801.

3069.

453.

98988.


4313.

7880.

2884.

427.

95074.





IowaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)IowaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



6.831.4

1206.2

Trisomy 13 211.2

73.4

281.4

Trisomy 18 392.3

2311.0

623.2


12057.5

26513.7


20876.

194062.


Notes1.Data for this condition exclude choanal stenosis.2.Data for this condition exclude not otherwise specified and unspecified limb reductions

General comments-Data for all conditions exclude probable/possible cases.-Fetal deaths defined as 20 or more weeks gestation and/or 350 grams or greater.-Terminations include all gestational ages.-Unspecified non-live births includes spontaneous abortions.




KansasBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)KansasBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 372.7

<5.

134.1

<5.

00.0

562.9

Anophthalmia/microphthalmia <5.

00.0

00.0

00.0

00.0

<5.

Anotia/microtia <5.

00.0

<5.

00.0

00.0

50.3

Aortic valve stenosis <5.

00.0

<5.

00.0

00.0

50.3


3929.4

7222.9

<5.

<5.

29515.2

1


171.2

<5.

<5.

00.0

00.0

231.2

Biliary atresia <5.

00.0

<5.

<5.

00.0

<5.


00.0

00.0

00.0

00.0

<5.

Choanal atresia <5.

00.0

<5.

00.0

00.0

80.4


<5.

<5.

<5.

00.0

180.9


<5.

134.1

00.0

00.0

502.6


53.8

237.3

<5.

<5.

924.7


<5.

<5.

<5.

00.0

301.5

Clubfoot 1097.9

86.0

299.2

<5.

00.0

1648.5


00.0

<5.

00.0

00.0

201.0

Common truncus (truncus arteriosus) <5.

00.0

00.0

00.0

00.0

<5.

Congenital cataract <5.

00.0

<5.

00.0

00.0

<5.

Congenital posterior urethral valves <5.

00.0

<5.

00.0

00.0

50.3

Craniosynostosis <5.

00.0

00.0

00.0

00.0

<5.


<5.

134.1

<5.

00.0

412.1

Double outlet right ventricle <5.

<5.

<5.

00.0

00.0

100.5

Ebstein anomaly <5.

00.0

<5.

00.0

00.0

<5.

Encephalocele <5.

00.0

<5.

00.0

00.0

60.3


110.8

<5.

<5.

00.0

00.0

180.9

Gastroschisis 715.1

<5.

144.4

00.0

00.0

985.1


<5.

134.1

<5.

00.0

583.0


<5.

<5.

<5.

00.0

211.1


2232.7

2414.9

516.9

<5.

23723.9


<5.

<5.

00.0

00.0

<5.


86.0

165.1

<5.

00.0

673.5




KansasBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 221.6

<5.

134.1

<5.

00.0

482.5


64.5

103.2

00.0

00.0

512.6


<5.

144.4

<5.

00.0

341.8


<5.

61.9

00.0

00.0

281.4


00.0

<5.

00.0

00.0

<5.


00.0

51.6

<5.

00.0

321.6


<5.

154.8

<5.

00.0

613.1


00.0

51.6

<5.

00.0

231.2


<5.

00.0

<5.

00.0

00.0

60.3


<5.

<5.

<5.

00.0

180.9

Tricuspid valve atresia and stenosis <5.

<5.

<5.

00.0

00.0

50.3

Trisomy 13 80.6

<5.

<5.

00.0

00.0

150.8

Trisomy 18 181.3

00.0

113.5

00.0

00.0

301.5


118.3

4915.6

1017.5

<5.

21711.2


00.0

<5.

00.0

00.0

70.7


129.0

8426.7

915.7

<5.

30315.6


13271.

31504.

5727.

962.

193977.


6721.

16072.

2966.

453.

99151.


6550.

15432.

2761.

509.

94826.

*Hypospadias prevalence per 10,000 male live births†Turner syndrome prevalence per 10,000 female live births. Excludes male phenotype.**Total includes unknown and other maternal race/ethnicity




KansasTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)KansasTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.4<5.

985.1

Trisomy 13 90.5

62.9

150.8

Trisomy 18 171.0

136.2

301.5


9545.5

21711.2


20872.

193977.


Notes1.Data for this condition had a high number of unknown race/ethnicity cases.

General comments-Data for conditions include live births and fetal deaths/stillbirths.-Includes probable cases.-Stillbirth means any complete expulsion or extraction from its mother of a human child the gestational age of which is not less than 20 completed weeks.




KentuckyBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)KentuckyBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 241.0

00.0

00.0

00.0

00.0

250.9


10.4

00.0

00.0

00.0

160.6


10.4

21.4

00.0

00.0

140.5


31.2

21.4

00.0

00.0

401.4


903372.5

194140.5

00.0

00.0

6092217.6


642.8

125.0

21.4

00.0

00.0

833.0


10.4

00.0

00.0

00.0

70.3


00.0

00.0

00.0

00.0

60.2


20.8

10.7

00.0

00.0

250.9


72.9

32.2

00.0

00.0

1033.7


83.3

53.6

00.0

00.0

1515.4


93.7

64.3

00.0

00.0

1545.5


166.6

32.2

13.5

00.0

1033.7

Clubfoot 35115.2

2711.1

139.4

00.0

00.0

40414.4


145.8

75.1

00.0

00.0

1736.2


41.7

00.0

00.0

00.0

180.6


20.8

00.0

00.0

00.0

190.7


62.5

00.0

00.0

00.0

301.1


10.4

10.7

00.0

00.0

40.1


104.1

21.4

00.0

00.0

762.7


104.1

10.7

00.0

00.0

732.6


10.4

00.0

00.0

00.0

130.5

Encephalocele 170.7

52.1

00.0

00.0

00.0

230.8


472.0

10.4

32.2

00.0

00.0

521.9

Gastroschisis 863.7

93.7

42.9

00.0

00.0

1043.7


93.7

53.6

00.0

00.0

1093.9


93.7

21.4

00.0

00.0

752.7


8568.9

1926.8

00.0

00.0

109175.8


20.8

00.0

00.0

00.0

100.4


41.7

32.2

27.0

00.0

802.9




KentuckyBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 311.3

20.8

10.7

00.0

00.0

341.2


177.0

64.3

00.0

00.0

2067.4


20.8

00.0

00.0

00.0

240.9


177.0

53.6

27.0

00.0

1756.3


114.5

42.9

13.5

00.0

1364.9


10.4

10.7

00.0

00.0

130.5


72.9

32.2

00.0

00.0

812.9


125.0

32.2

00.0

00.0

762.7


114.5

42.9

00.0

00.0

1093.9


160.7

20.8

21.4

00.0

00.0

210.8


52.1

00.0

00.0

00.0

632.3


482.1

41.7

00.0

00.0

00.0

521.9


20.8

00.0

00.0

00.0

250.9

Trisomy 13 241.0

31.2

10.7

00.0

00.0

281.0

Trisomy 18 351.5

31.2

10.7

00.0

00.0

411.5


2610.7

1712.3

00.0

00.0

30210.8


10.8

11.5

00.0

00.0

241.8


14158.2

5741.3

00.0

00.0

136548.8

1


24240.

13805.

2860.

288.

279959.


12328.

7089.

1456.

138.

143993.


11910.

6715.

1404.

150.

135943.





KentuckyTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)KentuckyTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



4.031.1

1043.7

Trisomy 13 230.9

51.8

281.0

Trisomy 18 241.0

176.2

411.5


7828.2

30210.8


27633.

279959.


Notes1.Data for this condition exclude inlet ventricular septal defect and common atrioventricular canal type ventricular septal defect.

General comments-Fetal death defined as 20 weeks or more gestation or 350 grams or greater.




LouisianaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)LouisianaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 111.1

<5.

<5.

<5.

00.0

170.9


50.7

00.0

00.0

00.0

130.7


<5.

<5.

00.0

00.0

<5.


71.0

<5.

00.0

00.0

191.0


25235.6

4035.5

825.0

<5.

64234.4


383.8

273.8

<5.

<5.

00.0

693.7

Biliary atresia <5.

<5.

00.0

00.0

00.0

60.3


<5.

00.0

00.0

00.0

60.3


<5.

00.0

00.0

00.0

160.9


121.7

<5.

<5.

00.0

492.6


273.8

76.2

00.0

00.0

744.0


263.7

54.4

<5.

00.0

904.8

Clubfoot <5.

00.0

00.0

00.0

.

.<5.


223.1

<5.

<5.

00.0

673.6


<5.

<5.

00.0

00.0

80.4


101.4

00.0

00.0

00.0

150.8


172.4

<5.

<5.

00.0

402.1

Deletion 22q11.2 <5.

<5.

00.0

<5.

00.0

<5.


101.4

<5.

00.0

00.0

251.3


71.0

<5.

00.0

00.0

231.2


<5.

<5.

<5.

00.0

80.4

Encephalocele 80.8

81.1

00.0

00.0

00.0

170.9


111.1

81.1

<5.

00.0

00.0

211.1

Gastroschisis 121.2

60.8

00.0

00.0

00.0

181.0

Holoprosencephaly <5.

00.0

00.0

00.0

00.0

<5.


152.1

00.0

00.0

00.0

211.1


18250.5

2136.8

848.3

582.6

64167.2

Interrupted aortic arch <5.

<5.

00.0

00.0

00.0

<5.


233.2

<5.

00.0

<5.

502.7

Omphalocele 90.9

162.3

00.0

<5.

00.0

261.4




LouisianaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







324.5

<5.

00.0

<5.

744.0


50.7

<5.

00.0

00.0

140.8


223.1

<5.

00.0

00.0

583.1


152.1

<5.

00.0

<5.

603.2

Single ventricle <5.

<5.

00.0

00.0

00.0

50.3


131.8

<5.

00.0

00.0

432.3


273.8

<5.

<5.

00.0

542.9


00.0

<5.

00.0

00.0

00.0

<5.


60.8

<5.

00.0

00.0

361.9


181.8

50.7

<5.

00.0

00.0

251.3


50.7

<5.

00.0

<5.

170.9


50.7

<5.

00.0

<5.

120.6

Trisomy 13 60.6

<5.

<5.

00.0

00.0

100.5

Trisomy 18 212.1

81.1

<5.

<5.

00.0

311.7


578.1

1412.4

515.6

00.0

1779.5


<5.

<5.

00.0

00.0

91.0


23933.8

5347.1

928.1

760.9

68636.8


70803.

11257.

3200.

1150.

186646.


36067.

5708.

1657.

605.

95318.


34736.

5548.

1543.

545.

91324.





LouisianaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)LouisianaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.4<5.

985.1

Trisomy 13 90.5

62.9

150.8

Trisomy 18 171.0

136.2

301.5


9545.5

21711.2


20872.

193977.


General comments-2009 birth defects data are provisional and include live births to Louisiana residents that occurred in 50/54 birth hospitals and covered 92 % of totalbirths.-2010 birth defects data are provisional and include only live births to Louisiana residents that occurred in 45/56 birth hospitals and covered 76 % of totalbirths.-2011 birth defects data are provisional and include only live births to Louisiana residents that occurred in 41/55 birth hospitals and covered 68 % of totalbirths.-2012 birth defects data are provisional and include only live births to Louisiana residents that occurred in 28/51 birth hospitals and covered 36 % of totalbirths.-2013 birth defects data are provisional and include only live births to Louisiana residents that occurred in 17/52 birth hospitals and covered 18 % of totalbirths.-All probable cases are included.-Only live births with birth weight >= 350 grams or a gestational age >= 20 weeks are included in surveillance.




MaineBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)MaineBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 101.7

210.0

00.0

00.0

00.0

162.5

1


00.0

00.0

00.0

00.0

40.6


00.0

00.0

00.0

00.0

10.8

2


00.0

2116.3

141.0

186.2

4333.7

2


32.5

00.0

00.0

00.0

00.0

32.3

2


00.0

00.0

00.0

00.0

51.3

3


00.0

00.0

00.0

00.0

203.1


15.0

00.0

18.8

00.0

314.8


15.0

00.0

18.8

117.0

416.3


00.0

00.0

00.0

00.0

324.9


00.0

00.0

00.0

00.0

30.5


122.6

00.0

282.0

00.0

4031.3

2


00.0

00.0

00.0

00.0

10.8

2


00.0

00.0

00.0

00.0

41.0

4


00.0

00.0

00.0

00.0

10.8

2

Encephalocele 50.8

00.0

00.0

18.8

00.0

60.9


54.2

00.0

00.0

00.0

00.0

53.9

2

Gastroschisis 386.4

00.0

110.0

18.8

00.0

416.3


210.0

110.0

00.0

00.0

274.2


764.6

358.1

467.7

399.7

22667.8


00.0

00.0

00.0

00.0

10.3

4


00.0

00.0

00.0

117.0

203.1

Omphalocele 111.8

00.0

00.0

00.0

00.0

111.7


15.0

00.0

18.8

00.0

274.2

5


15.0

00.0

00.0

00.0

50.8


00.0

00.0

00.0

00.0

86.3

2


122.6

00.0

00.0

00.0

97.0

2


00.0

00.0

00.0

00.0

10.3

4


00.0

00.0

00.0

00.0

213.2


00.0

00.0

00.0

00.0

284.3




MaineBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







15.0

00.0

18.8

00.0

223.4


00.0

00.0

00.0

00.0

50.8

Trisomy 13 21.7

00.0

00.0

00.0

00.0

21.6

2

Trisomy 18 21.7

00.0

00.0

00.0

00.0

21.6

2


15.0

440.2

18.8

00.0

7912.2


00.0

158.1

00.0

00.0

3225.0

2


2007.

996.

1132.

587.

64718.


1084.

516.

591.

301.

33331.





MaineTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)MaineTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



7.300.0

416.3

Trisomy 13 21.8

00.0

21.6

2

Trisomy 18 21.8

00.0

21.6

2


2730.7

7912.2


8792.

64718.


Notes1.Data for this condition include probable cases.2.Data for this condition begin in 2013.3.Data for this condition begin in 2011.4.Data for this condition end in 2011.5.Data for this condition include atresia only through 2010; data including stenosis begin in 2011.

General comments-Fetal deaths are defined as deaths that occur at any gestational age.-Termination data not available




MarylandBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)MarylandBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 372.2

90.7

71.3

00.0

00.0

571.6


20.2

10.2

00.0

00.0

40.1


20.2

61.2

10.4

00.0

150.4


00.0

00.0

00.0

00.0

30.1


80.7

20.4

00.0

00.0

190.5


60.4

70.6

10.2

00.0

00.0

150.4


00.0

00.0

00.0

00.0

00.0


20.2

10.2

00.0

00.0

60.2


20.2

10.2

00.0

00.0

90.2


151.2

20.4

51.9

00.0

932.5


262.2

193.7

62.3

00.0

1393.8


262.2

122.3

62.3

00.0

1433.9


00.0

00.0

00.0

00.0

20.1

Clubfoot 965.8

484.0

173.3

51.9

112.8

1784.9


30.2

20.4

10.4

00.0

200.5


10.1

00.0

10.4

00.0

50.1


10.1

00.0

00.0

00.0

30.1


30.2

00.0

10.4

00.0

90.2


30.2

10.2

00.0

00.0

90.2


00.0

00.0

00.0

00.0

00.0


90.7

20.4

00.0

00.0

200.5


10.1

00.0

00.0

00.0

120.3


10.1

10.2

00.0

00.0

70.2

Encephalocele 70.4

70.6

10.2

10.4

00.0

160.4


231.4

121.0

51.0

20.8

00.0

481.3

Gastroschisis 120.7

60.5

10.2

10.4

00.0

240.7


100.8

51.0

00.0

00.0

270.7


40.3

00.0

31.1

00.0

240.7


24840.6

4918.5

3425.0

00.0

76841.0


00.0

00.0

00.0

00.0

10.0




MarylandBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







484.0

152.9

31.1

00.0

1143.1

Omphalocele 20.1

50.4

00.0

00.0

00.0

110.3


40.3

00.0

00.0

00.0

130.4


00.0

00.0

00.0

00.0

00.0


191.6

51.0

41.5

00.0

561.5


201.7

20.4

31.1

00.0

511.4


70.6

00.0

00.0

00.0

200.5


100.8

10.2

00.0

00.0

270.7


171.4

81.5

20.8

00.0

852.3


90.7

20.4

51.9

00.0

501.4


10.1

00.0

00.0

00.0

00.0

20.1


50.4

10.2

31.1

00.0

220.6


100.6

20.2

10.2

31.1

00.0

160.4


20.2

10.2

00.0

00.0

80.2


00.0

10.2

00.0

00.0

20.1

Trisomy 13 140.8

40.3

10.2

10.4

00.0

200.5

Trisomy 18 251.5

90.7

91.7

20.8

00.0

491.3


978.1

479.0

186.9

00.0

37310.2


30.5

20.8

10.8

00.0

120.7


282.3

30.6

31.1

00.0

722.0

1


120483.

51948.

26252.

779.

366789.


61119.

26471.

13598.

388.

187175.


59364.

25477.

12654.

391.

179614.





MarylandTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)MarylandTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



0.530.4

240.7

Trisomy 13 70.2

131.9

200.5

Trisomy 18 260.9

223.3

491.3


18627.5

37310.2


67650.

366789.


Notes1.Data for this condition include probable cases.

General comments-Fetal deaths defined as gestational age greater than 20 weeks.-Terminations defined as gestational age less than or equal to 20 weeks.




MassachusettsBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)MassachusettsBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 311.3

41.2

122.0

31.0

00.0

591.6


41.2

132.2

31.0

00.0

481.3


41.2

183.0

92.9

00.0

752.1


30.9

50.8

20.7

00.0

461.3


9928.6

12921.6

6421.0

19.6

82722.6


1335.7

298.4

457.5

134.3

00.0

2266.2


20.6

61.0

41.3

00.0

200.5


00.0

10.2

00.0

00.0

90.2


00.0

50.8

00.0

00.0

260.7


92.6

132.2

154.9

00.0

1273.5


82.3

355.9

123.9

00.0

1855.1


195.5

315.2

165.2

00.0

2035.6

1


10.3

30.5

00.0

00.0

120.3

Clubfoot 34814.9

4513.0

7712.9

299.5

328.8

52114.3

2


195.5

284.7

62.0

00.0

1664.5


10.3

20.3

10.3

19.6

140.4


82.3

244.0

20.7

00.0

892.4


102.9

91.5

72.3

00.0

441.2


72.0

264.4

72.3

19.6

1895.2


51.4

111.8

72.3

00.0

531.5


61.7

172.8

82.6

00.0

1052.9


30.9

122.0

72.3

00.0

531.5


10.3

50.8

00.0

00.0

160.4

Encephalocele 150.6

30.9

91.5

41.3

00.0

340.9


793.4

92.6

193.2

20.7

00.0

1093.0

Gastroschisis 693.0

154.3

294.9

72.3

00.0

1253.4


30.9

132.2

31.0

00.0

481.3


82.3

142.3

51.6

00.0

732.0


5028.2

4314.0

2616.5

119.8

46825.0

3


30.9

20.3

00.0

00.0

160.4




MassachusettsBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







195.5

264.4

92.9

00.0

1724.7

Omphalocele 662.8

72.0

233.8

20.7

00.0

1012.8


5014.4

457.5

196.2

19.6

3118.5


30.9

40.7

20.7

00.0

220.6


133.8

254.2

123.9

00.0

1484.1


20.6

30.5

10.3

00.0

230.6

4


20.6

00.0

31.0

00.0

150.4


102.9

223.7

72.3

00.0

1062.9


72.0

233.8

51.6

00.0

1223.3


154.3

274.5

144.6

19.6

1714.7

5


130.6

30.9

81.3

103.3

00.0

340.9


113.2

183.0

92.9

00.0

1072.9


542.3

102.9

172.8

92.9

00.0

932.5


30.9

50.8

10.3

00.0

220.6


10.3

40.7

10.3

00.0

140.4

Trisomy 13 462.0

30.9

81.3

51.6

00.0

691.9

Trisomy 18 944.0

164.6

305.0

144.6

00.0

1714.7


6518.8

11519.2

5016.4

00.0

72119.7


63.6

103.4

53.4

118.7

1065.9


8023.1

13923.3

7022.9

19.6

81522.3

6


34653.

59764.

30541.

1042.

365243.


17758.

30606.

15771.

506.

187029.


16893.

29156.

14770.

536.

178206.





MassachusettsTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)MassachusettsTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



4.260.7

1253.4

Trisomy 13 291.0

404.9

691.9

Trisomy 18 592.1

10813.1

1714.7


41950.9

72119.7


82382.

365243.


Notes1.Data for this condition exclude isolated submucous cleft palate.2.Data for this condition is limited to those who require casting or other treatment if the case is live birth.3.Data for this condition exclude 1st degree and not otherwise specified.4.Data for this condition exclude isolated unilateral renal agenesis/hypoplasia.5.Data for this condition include pulmonary atresia with ventricular septal defect.6.Data for this condition exclude isolated muscular ventricular septal defect.

General comments-Coding system is modified CDC/BPA, but with different modified BPA codes for congenital cataract, diaphragmatic hernia, and double outlet rightventricle.-Excludes probable and possible cases.-For live births, race/ethnicity from vital records; new birth certificate in 2011--multiple categories allowed.-For stillbirths without vital record info and for unspecified non-livebirths, race/ethnicity from medical record.-Pregnancy outcomes include live births, stillbirths, and starting in 2011, unspecified non-live births.-Stillbirths defined as fetal deaths >= 20 weeks or >=350 grams.-Unspecified non-live births include elective terminations and early losses <20 weeks or <350 grams.




MichiganBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)MichiganBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 491.2

50.5

41.0

21.1

00.0

611.1


161.5

30.7

00.0

00.0

641.1


100.9

143.5

42.1

00.0

851.5


100.9

71.7

52.6

00.0

1152.0


1489141.1

27167.6

17491.5

32137.2

533293.1


2155.5

464.4

194.7

73.7

00.0

2905.1


212.0

92.2

10.5

00.0

721.3


00.0

00.0

00.0

00.0

110.2


292.7

30.7

42.1

14.3

1101.9


252.4

112.7

63.2

00.0

2404.2


393.7

205.0

105.3

28.6

2875.0


403.8

205.0

84.2

14.3

2905.1


595.6

235.7

63.2

28.6

2654.6

Clubfoot 49312.5

15314.5

297.2

3216.8

521.4

72012.6


44742.3

8220.4

4724.7

417.1

147925.8


201.9

00.0

31.6

14.3

731.3


161.5

51.2

42.1

00.0

991.7


222.1

10.2

21.1

00.0

751.3


50.5

10.2

10.5

00.0

240.4


333.1

164.0

115.8

14.3

1813.2


252.4

112.7

94.7

00.0

1412.5


80.8

20.5

00.0

00.0

450.8

Encephalocele 340.9

90.9

20.5

10.5

00.0

470.8


912.3

131.2

51.2

42.1

00.0

1152.0


454.3

112.7

21.1

00.0

2183.8


928.7

184.5

115.8

14.3

3476.1


565.3

143.5

52.6

14.3

2424.2


27851.7

6933.8

5757.9

650.0

173159.0


90.9

20.5

42.1

00.0

520.9


545.1

123.0

84.2

14.3

2253.9




MichiganBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 591.5

232.2

41.0

10.5

00.0

881.5


14613.8

317.7

189.5

28.6

5259.2


393.7

102.5

52.6

00.0

1382.4


605.7

133.2

94.7

28.6

2634.6


615.8

174.2

115.8

312.9

2824.9


302.8

123.0

21.1

00.0

931.6


524.9

123.0

31.6

00.0

2304.0


282.7

102.5

94.7

00.0

2033.5


696.5

205.0

115.8

14.3

3055.3


481.2

151.4

71.7

21.1

14.3

751.3


514.8

184.5

189.5

14.3

2935.1


1193.0

363.4

123.0

94.7

14.3

1793.1


131.2

61.5

10.5

00.0

721.3

Trisomy 13 170.4

131.2

20.5

21.1

00.0

350.6

Trisomy 18 431.1

181.7

82.0

31.6

00.0

751.3


12812.1

369.0

2714.2

00.0

71212.4


30.6

42.0

22.2

00.0

421.5


42640.4

14736.7

9449.4

1147.1

218338.1

1


105554.

40106.

19018.

2333.

572776.


53739.

20418.

9839.

1200.

293457.


51810.

19687.

9178.

1133.

279304.





MichiganTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)MichiganTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



4.320.3

2183.8

Trisomy 13 250.5

101.4

350.6

Trisomy 18 400.8

344.6

751.3


30140.9

71212.4


73655.

572776.



General comments-Data for conditions include live births only.




MinnesotaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)MinnesotaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 20.3

20.9

65.1

53.0

00.0

151.3


41.7

21.7

10.6

00.0

121.0


41.7

76.0

74.2

214.7

302.5


41.7

10.9

10.6

00.0

201.7


5322.7

2017.0

2716.1

322.1

20417.2


335.2

156.4

108.5

74.2

17.4

685.7

1


31.3

10.9

00.0

00.0

80.7


00.0

00.0

00.0

00.0

30.3


41.7

21.7

00.0

00.0

151.3


52.1

32.6

84.8

00.0

363.0


146.0

54.3

106.0

214.7

685.7


104.3

32.6

63.6

00.0

695.8


104.3

54.3

31.8

17.4

574.8


00.0

00.0

10.6

00.0

40.3


41.7

00.0

00.0

00.0

141.2


83.4

00.0

21.2

00.0

161.4


52.1

43.4

53.0

00.0

332.8


62.6

32.6

10.6

17.4

201.7


31.3

10.9

10.6

00.0

80.7

Encephalocele 40.6

10.4

10.9

31.8

17.4

100.8


172.7

73.0

32.6

53.0

00.0

322.7

Gastroschisis 162.5

31.3

65.1

106.0

17.4

373.1


52.1

32.6

10.6

00.0

231.9


8167.8

1830.4

1719.7

344.1

37662.0


104.3

21.7

63.6

17.4

433.6

2

Omphalocele 132.1

31.3

10.9

10.6

00.0

181.5


2711.6

1311.1

1710.2

536.8

1179.9


52.1

00.0

10.6

17.4

110.9


83.4

00.0

95.4

00.0

413.5


114.7

54.3

74.2

00.0

564.7




MinnesotaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







10.4

00.0

10.6

00.0

50.4


62.6

32.6

10.6

17.4

292.5


20.9

32.6

63.6

00.0

363.0

3


83.4

43.4

31.8

17.4

332.8


172.7

73.0

43.4

21.2

17.4

312.6


52.1

10.9

00.0

00.0

90.8

Trisomy 13 20.3

62.6

32.6

00.0

00.0

110.9

Trisomy 18 111.7

114.7

10.9

63.6

00.0

292.5


4519.3

2823.8

159.0

322.1

20717.5


12754.4

6252.8

6035.8

1395.7

59350.1

4


23347.

11752.

16742.

1358.

118308.


11940.

5914.

8628.

681.

60630.





MinnesotaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)MinnesotaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



3.800.0

373.1

Trisomy 13 60.6

52.4

110.9

Trisomy 18 151.5

146.7

292.5


9645.6

20717.5


21047.

118308.


Notes1.Data for this condition exclude inlet ventricular septal defect.2.Data for this condition exclude other specified reduction defect of lower limb, transverse reduction defect of lower limb not otherwise specified,unspecified reduction defect of lower limb, and reduction defects of unspecified limb.3.Data for this condition exclude pulmonary artery atresia with septal defect.4.Data for this condition include inlet ventricular septal defect.

General comments-Data are for Hennepin and Ramsey Counties only.-Excludes probable and possible cases.




MississippiBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)MississippiBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 10.1

50.6

00.0

00.0

00.0

60.3


50.6

00.0

00.0

00.0

110.6


141.6

23.0

14.2

214.7

341.7


40.5

11.5

00.0

00.0

241.2


1566180.3

4566.9

2396.0

64469.2

3107155.5


515.0

505.8

34.5

312.5

00.0

1125.6


91.0

11.5

00.0

00.0

170.9


10.1

00.0

00.0

00.0

50.3


20.2

00.0

00.0

00.0

50.3


111.3

11.5

14.2

17.3

432.2


455.2

23.0

416.7

17.3

1196.0


192.2

34.5

28.3

00.0

613.1


20.2

11.5

00.0

00.0

40.2

Clubfoot 20.2

00.0

11.5

00.0

00.0

30.2


364.1

11.5

00.0

00.0

733.7


50.6

11.5

00.0

00.0

160.8


91.0

00.0

00.0

00.0

110.6


242.8

11.5

00.0

00.0

452.3


00.0

00.0

00.0

00.0

00.0


182.1

23.0

14.2

00.0

502.5


242.8

23.0

28.3

00.0

482.4


50.6

00.0

00.0

00.0

150.8

Encephalocele 20.2

20.2

11.5

00.0

17.3

60.3


282.7

172.0

23.0

00.0

214.7

502.5


20.2

00.0

00.0

00.0

40.2


232.6

00.0

00.0

00.0

683.4


40492.8

823.8

432.5

115.1

78977.7


00.0

00.0

00.0

00.0

10.1


364.1

11.5

14.2

17.3

763.8


13115.1

34.5

312.5

17.3

27113.6




MississippiBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







333.8

23.0

28.3

17.3

683.4


141.6

11.5

14.2

17.3

291.5


10.1

00.0

00.0

00.0

10.1


40.5

00.0

00.0

00.0

80.4


242.8

11.5

14.2

00.0

593.0


586.7

23.0

14.2

00.0

1246.2


20.2

10.1

00.0

14.2

00.0

40.2


172.0

00.0

312.5

17.3

442.2


172.0

00.0

28.3

00.0

271.4

Trisomy 13 40.4

60.7

00.0

14.2

00.0

110.6

Trisomy 18 161.6

70.8

23.0

00.0

17.3

261.3


789.0

68.9

14.2

322.0

1919.6


00.0

00.0

00.0

00.0

10.1


52760.7

3450.6

1354.3

17124.6

119059.5

1


86879.

6725.

2396.

1364.

199847.


43553.

3362.

1231.

663.

101497.


43326.

3363.

1165.

701.

98350.





MississippiTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)MississippiTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



0.600.0

110.6

Trisomy 18 160.9

106.4

261.3


7548.0

1919.6


15618.

199847.


Notes1.Data for this condition does not include probable cases.




MissouriBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)MissouriBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 371.3

50.9

73.4

11.1

00.0

511.3


40.7

21.0

11.1

00.0

360.9


50.9

52.4

33.3

00.0

260.7


10.2

31.4

00.0

00.0

541.4


1012182.9

256123.6

94102.4

19192.3

5233136.9


1294.5

244.3

62.9

22.2

00.0

1634.3


81.4

10.5

00.0

00.0

350.9


10.2

00.0

00.0

00.0

150.4


81.4

31.4

11.1

00.0

772.0


203.6

115.3

44.4

220.2

2265.9


325.8

125.8

22.2

220.2

2687.0


183.3

146.8

44.4

00.0

2366.2


6912.5

115.3

77.6

00.0

2947.7

Clubfoot 50417.6

9216.6

2512.1

1516.3

220.2

65417.1


254.5

136.3

33.3

00.0

2406.3


30.5

31.4

00.0

00.0

230.6


122.2

41.9

22.2

220.2

832.2


152.7

41.9

00.0

00.0

651.7


20.4

10.5

11.1

00.0

290.8


376.7

52.4

22.2

00.0

1754.6


224.0

52.4

22.2

00.0

972.5


10.2

41.9

22.2

00.0

330.9

Encephalocele 270.9

122.2

31.4

11.1

00.0

441.2


993.4

152.7

21.0

22.2

110.1

1233.2


386.9

167.7

33.3

00.0

2255.9


346.1

157.2

33.3

110.1

2306.0


162.9

31.4

00.0

00.0

1112.9


290102.6

5249.5

3879.6

6121.5

180892.1


40.7

31.4

00.0

00.0

220.6


285.1

94.3

22.2

00.0

1694.4




MissouriBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 742.6

183.3

83.9

11.1

00.0

1042.7


7513.6

2311.1

44.4

110.1

40310.5


142.5

21.0

11.1

00.0

611.6


254.5

73.4

77.6

220.2

1905.0


386.9

83.9

66.5

00.0

1814.7


81.4

10.5

00.0

00.0

381.0


315.6

83.9

22.2

00.0

1594.2


61.1

73.4

00.0

00.0

1012.6


336.0

136.3

33.3

220.2

1834.8


200.7

40.7

10.5

00.0

00.0

270.7


132.3

62.9

33.3

00.0

1463.8


1133.9

101.8

41.9

22.2

00.0

1303.4


101.8

10.5

11.1

00.0

471.2

Trisomy 13 220.8

61.1

31.4

00.0

00.0

310.8

Trisomy 18 401.4

112.0

73.4

00.0

00.0

581.5


6411.6

4622.2

1112.0

440.5

51913.6


20.7

00.0

00.0

00.0

261.4


28150.8

11656.0

3538.1

330.4

183147.9


55345.

20709.

9184.

988.

382280.


28276.

10504.

4774.

494.

196224.


27067.

10204.

4410.

494.

186049.





MissouriTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)MissouriTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



6.451.2

2255.9

Trisomy 13 200.6

112.7

310.8

Trisomy 18 361.1

225.4

581.5


21953.4

51913.6


41026.

382280.





NebraskaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)NebraskaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 131.3

00.0

84.1

00.0

00.0

211.6


11.1

00.0

12.8

15.1

201.5


00.0

136.7

12.8

00.0

312.4


00.0

31.5

00.0

00.0

272.1


910.3

2814.4

719.8

315.4

21816.7


232.4

11.1

42.1

25.7

00.0

322.5


11.1

00.0

00.0

00.0

50.4


11.1

00.0

00.0

00.0

70.5


11.1

42.1

00.0

00.0

241.8


33.4

94.6

514.1

315.4

594.5


44.6

147.2

617.0

420.6

876.7


55.7

115.7

411.3

15.1

836.4


00.0

00.0

00.0

00.0

00.0

Clubfoot 16016.6

1416.1

3116.0

514.1

315.4

21616.5


00.0

136.7

38.5

00.0

1078.2


11.1

21.0

00.0

00.0

120.9


00.0

42.1

38.5

00.0

302.3


11.1

00.0

00.0

00.0

60.5


00.0

31.5

00.0

00.0

241.8


11.1

00.0

00.0

00.0

40.3


22.3

63.1

12.8

210.3

231.8


22.3

21.0

12.8

210.3

191.5


00.0

21.0

00.0

15.1

100.8

Encephalocele 90.9

00.0

10.5

12.8

15.1

120.9


242.5

11.1

63.1

00.0

00.0

312.4

Gastroschisis 485.0

33.4

115.7

25.7

525.7

725.5


11.1

31.5

12.8

00.0

110.8


55.7

52.6

00.0

210.3

564.3


3375.5

4646.1

316.7

19.8

52979.2


00.0

21.0

00.0

00.0

131.0




NebraskaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







55.7

94.6

12.8

15.1

755.7

Omphalocele 242.5

33.4

10.5

12.8

00.0

302.3


490563.0

924475.6

158446.5

55282.8

7143546.9


22.3

73.6

00.0

210.3

282.1


55.7

105.1

411.3

00.0

715.4


66.9

147.2

12.8

15.1

957.3


33.4

21.0

00.0

15.1

352.7


55.7

73.6

25.7

00.0

362.8


33.4

126.2

00.0

15.1

735.6


22.3

52.6

25.7

15.1

423.2


70.7

11.1

73.6

00.0

00.0

161.2


22.3

52.6

00.0

00.0

675.1


454.7

22.3

42.1

00.0

00.0

554.2


44.6

10.5

00.0

00.0

211.6

Trisomy 13 121.2

33.4

63.1

00.0

00.0

211.6

Trisomy 18 383.9

55.7

84.1

25.7

00.0

544.1


89.2

4020.6

514.1

15.1

24418.7


12.3

44.2

00.0

00.0

193.0


2326.4

9850.4

1233.9

420.6

60646.4


8703.

19429.

3539.

1945.

130602.


4373.

9987.

1792.

1019.

66822.


4330.

9440.

1747.

926.

63778.





NebraskaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)NebraskaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.942.6

725.5

Trisomy 13 161.4

53.3

211.6

Trisomy 18 302.6

2415.6

544.1


10065.1

24518.8


15367.

130602.





NevadaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)NevadaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 20.3

10.6

20.3

00.0

00.0

50.3


42.2

111.7

21.4

00.0

231.3


00.0

40.6

10.7

00.0

100.6


00.0

91.4

10.9

00.0

231.3


434240.3

990151.7

248173.0

1796.0

2967167.1


141.9

84.4

121.8

21.4

00.0

372.1


00.0

20.3

10.7

00.0

100.6


00.0

20.3

00.0

00.0

60.3


10.6

60.9

00.0

00.0

171.0


42.2

121.8

64.2

00.0

472.6


168.9

578.7

21.4

00.0

1216.8


73.9

253.8

32.1

15.6

784.4


63.3

142.1

42.8

00.0

502.8

Clubfoot 8811.7

168.9

7812.0

117.7

15.6

20211.4


105.5

436.6

64.2

00.0

1106.2


10.6

60.9

00.0

00.0

80.5


32.1

40.8

10.9

00.0

110.8


00.0

20.3

10.7

00.0

80.5


137.2

355.4

53.5

00.0

1337.5


00.0

00.0

00.0

00.0

10.1


52.8

203.1

32.1

00.0

452.5


31.7

142.1

10.7

00.0

291.6


00.0

30.6

00.0

00.0

70.5

Encephalocele 70.9

10.6

10.2

21.4

00.0

120.7


172.3

31.7

172.6

10.7

00.0

382.1


137.2

243.7

139.1

00.0

905.1


42.2

142.1

10.7

00.0

372.1


3740.3

7823.3

2330.7

111.0

32735.9


21.1

71.1

10.7

00.0

160.9


73.9

182.8

21.4

15.6

603.4




NevadaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







3519.4

558.4

85.6

316.9

18910.6


10.6

111.7

00.0

00.0

231.3


21.1

284.3

42.8

00.0

633.5


63.3

274.1

64.2

316.9

734.1


31.7

10.2

00.0

00.0

90.5


84.4

233.5

42.8

15.6

673.8


84.4

121.8

32.1

00.0

432.4


52.8

264.0

53.5

211.3

613.4


60.8

00.0

30.5

10.7

00.0

110.6


63.3

60.9

10.7

00.0

231.3


70.9

52.8

40.6

00.0

00.0

171.0


116.1

132.0

32.1

00.0

502.8


00.0

10.8

13.5

00.0

30.9

Trisomy 13 60.8

10.6

71.1

10.7

00.0

150.8

Trisomy 18 81.1

10.6

101.5

00.0

00.0

231.3


1910.5

12118.5

1611.2

211.3

24413.7


22.3

51.6

00.0

00.0

111.3


7038.8

32950.4

5034.9

739.5

85948.4

1


18058.

65253.

14335.

1771.

177507.


9179.

33415.

7499.

908.

91160.


8879.

31838.

6836.

863.

86347.





NevadaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)NevadaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



0.562.3

150.8

Trisomy 18 130.9

51.9

231.3


9536.2

24413.7


26233.

177507.


Notes1.Data for this condition excluded if less than 2500 grams birth weight or less than 36 weeks gestation.

General comments-Data for conditions include live births and resident births only.-Data for this condition exclude probable/possible cases.




New JerseyBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)New JerseyBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 30.1

00.0

20.1

10.2

00.0

60.1


70.9

100.7

30.5

117.7

410.8


81.0

715.2

91.6

00.0

1302.5


30.4

130.9

10.2

00.0

380.7


40752.3

46433.7

12222.2

588.7

155629.7


562.4

273.5

392.8

30.5

00.0

1302.5


50.6

130.9

20.4

00.0

310.6


00.0

30.2

00.0

00.0

80.2


121.5

171.2

10.2

00.0

581.1


162.1

533.8

132.4

00.0

1593.0


212.7

594.3

183.3

117.7

1863.6


243.1

785.7

437.8

00.0

2905.5


192.4

423.1

132.4

00.0

1262.4

Clubfoot 2319.9

9612.3

1379.9

448.0

117.7

53110.2


182.3

473.4

122.2

117.7

1753.3


50.6

60.4

10.2

00.0

230.4


172.2

372.7

71.3

117.7

971.9


141.8

110.8

40.7

00.0

541.0


10.1

20.1

00.0

00.0

70.1


40.5

302.2

71.3

00.0

751.4


192.4

191.4

50.9

00.0

571.1


30.4

90.7

10.2

117.7

330.6

Encephalocele 100.4

40.5

30.2

20.4

00.0

210.4


592.5

182.3

302.2

112.0

00.0

1262.4

Gastroschisis 441.9

182.3

413.0

30.5

235.5

1132.2


435.5

826.0

81.5

00.0

2284.4


121.5

161.2

00.0

00.0

611.2


26566.9

37854.0

15956.2

4134.2

202475.7


91.2

80.6

10.2

00.0

260.5


486.2

664.8

132.4

00.0

2384.5




New JerseyBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 180.8

141.8

130.9

40.7

00.0

501.0


8410.8

1218.8

274.9

117.7

4137.9


91.2

151.1

20.4

00.0

420.8


243.1

533.8

193.5

117.7

1743.3


303.9

735.3

234.2

117.7

2825.4


40.5

20.1

30.5

00.0

140.3


273.5

473.4

101.8

00.0

1542.9


212.7

463.3

81.5

00.0

1282.4


324.1

463.3

152.7

00.0

1703.2


60.3

70.9

201.5

20.4

00.0

350.7


202.6

251.8

91.6

00.0

1001.9


261.1

131.7

141.0

71.3

00.0

621.2


11614.9

18813.7

244.4

00.0

52910.1

Trisomy 13 40.2

60.8

70.5

00.0

00.0

190.4

Trisomy 18 180.8

162.1

90.7

20.4

00.0

450.9


9111.7

21815.8

305.5

235.5

61811.8


20.5

40.6

10.4

00.0

180.7


42654.8

84361.2

23743.2

235.5

286754.8


77784.

137697.

54916.

564.

523109.


39610.

69974.

28306.

298.

267459.


38171.

67722.

26610.

266.

255646.





New JerseyTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)New JerseyTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



2.640.4

1132.2

Trisomy 13 130.3

60.5

190.4

Trisomy 18 200.5

242.1

450.9


32228.8

61811.8


111868.

523109.





New MexicoBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)New MexicoBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 92.5

00.0

192.7

13.9

42.4

352.7


00.0

263.6

00.0

63.6

393.0


14.4

496.9

00.0

1710.2

886.8


313.2

507.0

27.7

137.8

1017.8


00.0

10.1

00.0

00.0

10.1

Gastroschisis 123.3

28.8

547.6

27.7

106.0

826.3


00.0

91.3

00.0

42.4

201.5


1087.4

12534.5

430.6

1315.5

28643.1


14.4

547.6

27.7

95.4

967.4


00.0

131.8

00.0

21.2

171.3


14.4

466.5

00.0

127.2

856.5


14.4

182.5

311.6

63.6

362.8


28.8

111.5

00.0

31.8

191.5

Trisomy 13 41.1

28.8

91.3

13.9

21.2

262.0

Trisomy 18 51.4

313.2

91.3

13.9

42.4

473.6


313.2

9112.8

13.9

1710.2

17213.2


2268.

71317.

2597.

16646.

130274.


1144.

36200.

1306.

8404.

66334.





New MexicoTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)New MexicoTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



6.910.7

826.3

Trisomy 13 141.2

42.9

262.0

Trisomy 18 161.4

64.3

473.6


6143.5

17213.2


14026.

130274.


General comments-Unspecified non-livebirths include terminations plus spontaneous abortions.




New YorkBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)New YorkBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 150.2

50.3

100.3

30.2

00.0

340.3


231.2

361.3

121.0

00.0

1231.0


170.9

642.2

302.4

29.2

1741.4


160.8

411.4

151.2

00.0

1861.5


173289.0

180362.9

80865.2

627.5

681655.5


2454.0

1206.2

1234.3

514.1

29.2

5484.5


392.0

260.9

241.9

14.6

1451.2


10.1

40.1

10.1

00.0

210.2


341.7

471.6

121.0

00.0

2151.8


271.4

461.6

302.4

14.6

2772.3


673.4

1334.6

695.6

418.3

5784.7


804.1

1354.7

977.8

14.6

6955.7


00.0

00.0

00.0

00.0

00.0

Clubfoot 93415.3

27614.2

36612.8

18214.7

313.7

177714.5


824.2

1475.1

695.6

29.2

6385.2


110.6

110.4

90.7

00.0

680.6


392.0

652.3

252.0

00.0

2462.0


472.4

250.9

141.1

00.0

1411.1


532.7

1374.8

403.2

29.2

6205.0


60.3

70.2

20.2

00.0

380.3


432.2

562.0

362.9

00.0

2862.3


492.5

642.2

433.5

00.0

2502.0


140.7

270.9

80.6

00.0

850.7

Encephalocele 350.6

201.0

180.6

100.8

00.0

850.7


1392.3

331.7

612.1

231.9

00.0

2642.1


442.3

652.3

131.0

00.0

2862.3


140.7

190.7

10.1

00.0

710.6


532.7

682.4

241.9

14.6

2942.4


74975.6

69547.7

36456.8

763.8

477075.8


150.8

260.9

80.6

00.0

980.8




New YorkBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







683.5

772.7

241.9

00.0

3572.9

Omphalocele 881.4

231.2

260.9

100.8

29.2

1501.2


19610.1

2237.8

1139.1

14.6

10018.1


170.9

281.0

201.6

00.0

1181.0


663.4

1083.8

655.2

14.6

4683.8


743.8

1284.5

584.7

14.6

5934.8


130.7

240.8

141.1

00.0

980.8


1085.5

1013.5

594.8

14.6

5174.2


371.9

722.5

211.7

29.2

2882.3


1005.1

1284.5

1159.3

14.6

6465.3


550.9

261.3

431.5

252.0

00.0

1501.2


281.4

662.3

423.4

00.0

3222.6


1722.8

281.4

662.3

403.2

00.0

3122.5


311.6

381.3

252.0

00.0

1771.4


140.7

160.6

151.2

00.0

1020.8

Trisomy 13 230.4

231.2

150.5

90.7

00.0

710.6

Trisomy 18 560.9

382.0

381.3

141.1

00.0

1461.2


26113.4

38013.3

15312.3

29.2

151812.4


131.4

201.4

91.5

00.0

931.6


85644.0

130145.4

68755.4

1045.8

579947.2


194618.

286642.

124002.

2185.

1228354.


99012.

145775.

64062.

1097.

629099.


95606.

140866.

59939.

1088.

599244.





New YorkTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)New YorkTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



2.890.4

2862.3

Trisomy 13 450.5

261.0

710.6

Trisomy 18 790.8

672.7

1461.2


78231.1

151812.4


251179.

1228354.





North CarolinaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)North CarolinaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 922.7

261.8

353.8

41.9

44.7

1823.0


241.7

202.2

41.9

11.2

1101.8


130.9

424.5

31.4

67.1

1101.8


281.9

161.7

20.9

11.2

1372.3


95766.0

48352.2

8841.1

7083.1

343956.5


2256.6

1006.9

576.2

115.1

78.3

4086.7


100.7

40.4

10.5

00.0

340.6


70.5

30.3

00.0

00.0

200.3


151.0

171.8

31.4

11.2

821.3


503.5

232.5

52.3

55.9

2083.4


553.8

606.5

136.1

89.5

3505.8


513.5

353.8

104.7

67.1

3676.0


70.5

50.5

00.0

00.0

230.4

Clubfoot 69420.4

27418.9

17318.7

2813.1

1517.8

119719.7


573.9

353.8

83.7

11.2

2944.8


80.6

70.8

31.4

00.0

410.7


211.4

91.0

20.9

00.0

570.9


443.0

161.7

20.9

33.6

1502.5


473.2

465.0

83.7

55.9

3776.2


312.1

283.0

62.8

33.6

1803.0


251.7

121.3

00.0

22.4

981.6


90.6

50.5

20.9

11.2

430.7

Encephalocele 310.9

201.4

141.5

00.0

22.4

741.2


1043.1

322.2

202.2

10.5

11.2

1582.6


594.1

323.5

31.4

78.3

2804.6


231.6

222.4

31.4

22.4

891.5


322.2

242.6

41.9

00.0

1492.4


37951.6

11223.8

6054.2

3070.0

171155.1


161.1

70.8

31.4

00.0

440.7


805.5

404.3

62.8

78.3

3045.0




North CarolinaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 702.1

533.7

232.5

83.7

22.4

1622.7


1389.5

636.8

157.0

1113.1

4888.0


322.2

80.9

62.8

22.4

991.6


533.7

485.2

83.7

55.9

2604.3


795.5

525.6

41.9

55.9

3686.1


141.0

131.4

20.9

00.0

591.0


463.2

374.0

94.2

33.6

1903.1


433.0

444.8

52.3

33.6

2484.1


704.8

333.6

125.6

67.1

2664.4


361.1

151.0

181.9

31.4

11.2

731.2


433.0

212.3

62.8

55.9

1953.2


852.5

211.4

121.3

62.8

55.9

1302.1


543.7

222.4

41.9

67.1

1652.7


483.3

181.9

41.9

67.1

1452.4

Trisomy 13 320.9

312.1

171.8

31.4

11.2

881.4

Trisomy 18 1113.3

503.5

353.8

52.3

11.2

2103.5


1278.8

14415.6

2612.2

1416.6

77512.7


71.0

92.0

00.0

00.0

602.0


59340.9

47951.8

7635.5

3238.0

270344.4


144892.

92560.

21395.

8422.

608240.


73397.

47093.

11078.

4288.

310658.


71494.

45463.

10317.

4134.

297575.





North CarolinaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)North CarolinaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.191.1

2804.6

Trisomy 13 581.1

303.7

881.4

Trisomy 18 1172.2

9111.3

2103.5


36645.3

77512.7


80875.

608240.


General comments-Fetal deaths are defined as deaths at 20 or more weeks gestation.-Terminations are defined as termination of pregnancy before 20 weeks gestation and do not include intra-uterine fetal death before 20 weeks.




North DakotaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)North DakotaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 194.9

19.5

00.0

00.0

36.7

234.8


00.0

00.0

113.3

00.0

10.2


00.0

00.0

00.0

12.2

61.3


00.0

00.0

00.0

24.4

81.7


24226.8

00.0

679.9

110244.2

491102.4


194.9

00.0

00.0

113.3

12.2

214.4


00.0

00.0

00.0

00.0

20.4


00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

00.0

30.6


00.0

00.0

226.6

1022.2

6212.9


00.0

00.0

339.9

1942.2

5110.6


00.0

00.0

339.9

1431.1

8016.7


00.0

00.0

00.0

00.0

10.2

1


19.5

00.0

00.0

24.4

183.8


00.0

00.0

00.0

12.2

61.3


19.5

00.0

00.0

00.0

71.5


00.0

00.0

00.0

36.7

163.3


00.0

00.0

00.0

00.0

20.4


19.5

00.0

00.0

00.0

71.5

Encephalocele 10.3

00.0

00.0

00.0

12.2

30.6


71.8

19.5

00.0

00.0

00.0

81.7

Gastroschisis 143.6

00.0

00.0

00.0

920.0

234.8


00.0

00.0

00.0

12.2

20.4

1


00.0

00.0

00.0

12.2

153.1

Hypospadias* 6733.9

352.4

00.0

125.3

730.3

8032.7


00.0

00.0

00.0

36.7

91.9

Omphalocele 51.3

00.0

00.0

00.0

12.2

61.3


437.8

00.0

113.3

1533.3

8016.7


00.0

00.0

00.0

24.4

91.9


19.5

00.0

00.0

00.0

112.3




North DakotaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







19.5

00.0

00.0

715.5

122.5


00.0

00.0

00.0

12.2

20.4


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

511.1

306.3


00.0

00.0

00.0

48.9

173.5


00.0

00.0

00.0

00.0

12.2

10.2


00.0

00.0

00.0

24.4

132.7


61.5

00.0

00.0

00.0

24.4

91.9


00.0

00.0

00.0

12.2

40.8


00.0

00.0

00.0

12.2

40.8

Trisomy 13 10.3

00.0

00.0

00.0

00.0

10.2

Trisomy 18 30.8

00.0

00.0

00.0

36.7

61.3


19.5

00.0

226.6

36.7

5311.1


00.0

00.0

128.2

00.0

20.9


547.3

00.0

339.9

3884.4

18739.0

2


1058.

1720.

751.

4504.

47959.


573.

880.

396.

2313.

24452.


485.

840.

355.

2189.

23504.





North DakotaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)North DakotaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



4.700.0

234.8

Trisomy 13 10.2

00.0

10.2

Trisomy 18 51.2

00.0

61.3


2348.6

5311.1


4737.

47959.


Notes1.Data for this condition begin in 2013.2.Data for this condition exclude inlet ventricular septal defect and common atrioventricular canal type ventricular septal defect.

General comments-Fetal Death reporting not required before 20 weeks gestation. North Dakota does not differentiate between fetal deaths and terminations.




OklahomaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)OklahomaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 382.3

41.6

92.3

00.0

72.4

582.2


00.0

41.0

11.4

62.1

331.2


20.8

143.6

34.3

31.0

501.9


31.2

143.6

00.0

41.4

833.1


16467.3

18547.0

2130.0

18363.5

165562.2


875.2

208.2

215.3

22.9

103.5

1415.3


31.2

20.5

00.0

41.4

200.8


10.4

00.0

00.0

20.7

80.3


52.1

41.0

00.0

20.7

381.4


83.3

112.8

22.9

113.8

1074.0


104.1

266.6

34.3

269.0

2138.0


145.7

256.4

912.8

206.9

2097.9

Clubfoot 31318.8

2510.3

6616.8

57.1

5218.0

47217.7


114.5

174.3

11.4

165.6

1335.0


41.6

10.3

00.0

31.0

180.7


31.2

30.8

11.4

20.7

351.3


52.1

10.3

00.0

20.7

301.1


41.6

82.0

22.9

93.1

823.1


31.2

20.5

00.0

51.7

261.0


41.6

215.3

22.9

103.5

963.6


93.7

51.3

22.9

93.1

572.1


00.0

61.5

11.4

00.0

210.8

Encephalocele 130.8

62.5

30.8

00.0

62.1

281.1


442.6

31.2

92.3

11.4

93.1

662.5

Gastroschisis 915.5

93.7

184.6

34.3

186.2

1395.2


20.8

61.5

00.0

51.7

321.2


10.4

112.8

11.4

62.1

622.3


4738.0

178.5

719.8

4329.4

46133.8


31.2

30.8

00.0

31.0

230.9


124.9

143.6

11.4

124.2

1254.7




OklahomaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 372.2

93.7

92.3

00.0

41.4

592.2


218.6

266.6

57.1

134.5

2228.3


41.6

41.0

22.9

41.4

341.3


114.5

256.4

57.1

134.5

1565.9


83.3

164.1

11.4

134.5

1425.3


10.4

20.5

00.0

00.0

120.5


93.7

112.8

00.0

93.1

1053.9


52.1

133.3

00.0

93.1

853.2


104.1

102.5

57.1

134.5

1164.4


211.3

20.8

61.5

11.4

51.7

351.3


83.3

143.6

11.4

103.5

943.5


452.7

83.3

112.8

11.4

82.8

762.9


31.2

41.0

11.4

20.7

291.1


20.8

20.5

00.0

10.3

170.6

Trisomy 13 130.8

41.6

41.0

00.0

20.7

240.9

Trisomy 18 342.0

93.7

51.3

22.9

72.4

572.1


249.8

7418.8

811.4

269.0

34112.8


21.7

52.6

00.0

21.4

332.5


13254.2

20552.1

3347.1

14048.6

155158.3


24372.

39331.

7009.

28819.

266089.


12367.

20116.

3535.

14622.

136352.


12005.

19214.

3474.

14197.

129733.





OklahomaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)OklahomaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.631.3

1395.2

Trisomy 13 180.7

62.6

240.9

Trisomy 18 351.4

229.5

572.1


14160.9

34112.8


23162.

266089.


General comments-Fetal deaths defined as baby born dead (without a heart rate), at or after 20th gestational week. This includes babies that died during labor.-Terminations defined as fetus terminated by parental choice prior to 37 weeks. When labor is induced to deliver a fetus who is dead prior to the onset oflabor it is not considered an elective termination.




OregonBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)OregonBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 140.9

24.3

71.6

21.9

00.0

261.1


00.0

122.7

21.9

00.0

642.8


612.9

419.2

1110.4

621.9

2149.4


36.5

4710.5

76.6

414.6

2219.7

Gastroschisis 674.3

36.5

265.8

65.7

13.7

1145.0


24.3

286.3

32.8

13.7

974.3


36154.2

13459.0

2851.6

963.5

99485.0


36.5

357.8

32.8

311.0

1747.6


48.6

4610.3

76.6

311.0

1988.7


24.3

316.9

43.8

13.7

1436.3


12.2

276.1

65.7

311.0

1556.8


1021.5

11425.6

1917.9

725.6

43118.9


4650.

44612.

10600.

2738.

228115.


2335.

22723.

5423.

1418.

116950.





OregonTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)OregonTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.741.1

1145.0


18351.7

43118.9


35406.

228115.





Puerto RicoBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)Puerto RicoBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)


Defect Hispanic Total** NotesAnencephalus 77

3.8773.8


321.6


472.3


221.1


50624.8

Atrioventricular septal defect (Endocardial cushion defect) 964.7

964.7

1


30.1


733.6


1306.4


1296.3

Clubfoot 35117.2

35117.2


613.0


110.5


351.7


211.0

Encephalocele 241.2

241.2

Gastroschisis 994.9

994.9


412.0


44041.9


1477.2

Omphalocele 381.9

381.9


1919.4


211.0


1065.2


824.0

Total anomalous pulmonary venous connection 140.7

140.7


542.7

Dextro-transposition of great arteries (d-TGA) 542.7

542.7


160.8


190.9

Trisomy 13 331.6

331.6

Trisomy 18 824.0

824.0




Puerto RicoBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)


Defect Hispanic Total** NotesTrisomy 21 (Down syndrome) 268

13.226813.2


52926.0

2


203719.


104909.





Puerto RicoTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)Puerto RicoTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.300.0

994.9

Trisomy 13 231.2

105.7

331.6

Trisomy 18 522.8

3017.1

824.0


10861.5

26813.2


17566.

203719.


Notes1.Data for this condition only include atrioventricular canal.2.Data for this condition exclude probable diagnosis and exclude inlet/posterior type ventricular septal defect only in the presence of atrioventricularcanal.

General comments-Fetal deaths include includes spontaneous abortions and stillbirths.-There is no gestational age cut off for terminations.




Rhode IslandBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)Rhode IslandBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 92.7

12.1

10.8

00.0

00.0

112.0


12.1

10.8

00.0

00.0

50.9


12.1

00.0

00.0

00.0

20.4


00.0

21.6

00.0

00.0

101.9


2042.2

2519.9

311.8

246.4

14727.3


103.0

00.0

10.8

00.0

00.0

112.0


00.0

10.8

00.0

00.0

30.6


12.1

00.0

00.0

00.0

10.2


12.1

00.0

00.0

00.0

20.4


00.0

43.2

00.0

00.0

183.3


00.0

97.2

13.9

123.2

285.2


12.1

21.6

311.8

00.0

224.1


00.0

00.0

00.0

00.0

10.2

Clubfoot 5015.1

816.9

1612.7

311.8

00.0

7914.7


36.3

21.6

13.9

00.0

152.8


12.1

00.0

00.0

00.0

20.4


12.1

21.6

00.0

00.0

40.7


12.1

10.8

00.0

00.0

40.7


00.0

64.8

311.8

00.0

305.6


00.0

00.0

00.0

00.0

10.2


12.1

32.4

00.0

00.0

132.4


24.2

00.0

27.9

00.0

61.1


12.1

10.8

00.0

00.0

50.9

Encephalocele 30.9

00.0

32.4

00.0

00.0

71.3


72.1

00.0

10.8

00.0

00.0

81.5

Gastroschisis 103.0

12.1

129.5

00.0

00.0

244.5


12.1

10.8

00.0

00.0

50.9


48.4

43.2

13.9

00.0

163.0


1769.4

3351.2

645.8

145.5

23786.0


00.0

00.0

00.0

00.0

00.0




Rhode IslandBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







24.2

54.0

00.0

00.0

193.5

Omphalocele 92.7

12.1

43.2

13.9

00.0

152.8


24.2

1310.3

415.7

00.0

366.7


00.0

32.4

311.8

00.0

81.5


36.3

64.8

00.0

00.0

203.7


24.2

54.0

00.0

00.0

163.0


00.0

00.0

00.0

00.0

10.2


510.6

86.4

27.9

00.0

315.8


36.3

54.0

00.0

00.0

264.8


36.3

32.4

13.9

00.0

132.4


30.9

00.0

00.0

00.0

00.0

40.7


00.0

21.6

13.9

00.0

91.7


20.6

24.2

00.0

27.9

00.0

61.1


00.0

21.6

13.9

00.0

40.7


00.0

21.6

13.9

00.0

40.7

Trisomy 13 61.8

36.3

32.4

00.0

00.0

132.4

Trisomy 18 103.0

36.3

43.2

00.0

00.0

203.7


919.0

1411.1

13.9

123.2

9317.3


00.0

11.6

18.1

00.0

51.9


3165.5

4132.6

1039.3

246.4

23744.0

1


4735.

12584.

2544.

431.

53843.


2451.

6442.

1309.

220.

27560.


2283.

6142.

1235.

211.

26282.





Rhode IslandTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)Rhode IslandTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



5.111.1

244.5

Trisomy 13 71.6

55.5

132.4

Trisomy 18 71.6

1112.1

203.7


4549.4

9317.3


9103.

53843.



General comments-Stillbirths are fetal deaths at 20 weeks or more gestation.-Terminations are induced fetal deaths at 20 weeks or more gestation.




South CarolinaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)South CarolinaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 432.6

131.4

135.3

00.0

00.0

712.4


80.9

10.4

00.0

00.0

230.8


101.1

10.4

11.9

00.0

250.9


91.0

31.2

00.0

00.0

270.9


965.7

515.4

135.3

11.9

00.0

1635.6


91.0

10.4

00.0

00.0

160.5


10.1

00.0

00.0

00.0

50.2

1


91.0

10.4

00.0

00.0

331.1


343.6

124.9

59.6

00.0

1424.9


464.9

124.9

35.8

18.3

1745.9


30.3

10.4

00.0

18.3

160.5


60.6

41.6

00.0

00.0

210.7


272.9

93.7

00.0

00.0

893.0


353.7

41.6

00.0

00.0

832.8


50.5

31.2

00.0

00.0

200.7

Encephalocele 161.0

101.1

62.4

11.9

00.0

331.1


342.0

121.3

31.2

11.9

00.0

511.7

Gastroschisis 814.8

242.6

114.5

11.9

00.0

1194.1


485.1

83.3

11.9

00.0

1234.2


616.5

145.7

815.4

18.3

1926.6

Omphalocele 392.3

232.5

31.2

00.0

18.3

682.3


10511.2

208.1

47.7

18.3

2699.2


363.8

20.8

47.7

00.0

1204.1


505.3

114.5

47.7

00.0

1505.1


232.5

62.4

47.7

00.0

973.3


525.6

114.5

11.9

00.0

1505.1


313.3

52.0

11.9

00.0

842.9


141.5

00.0

11.9

00.0

341.2

Trisomy 13 130.8

121.3

62.4

11.9

00.0

321.1

Trisomy 18 462.7

242.6

93.7

00.0

00.0

792.7




South CarolinaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







737.8

4217.1

611.5

00.0

32811.2


33335.6

13956.5

1936.5

18.3

114439.1

2


93632.

24588.

5206.

1199.

292526.





South CarolinaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)South CarolinaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



4.451.5

1194.1

Trisomy 13 230.9

92.8

321.1

Trisomy 18 411.6

3811.7

792.7


15146.3

32811.2


32583.

292526.


Notes1.Data for this condition begin in 2010.2.Data for this condition include confirmed cases only.

General comments-Abortions in South Carolina are not usually performed after 24 weeks gestation.-Fetal Deaths include those that occur in a hospital at 20 weeks or more gestation.




TennesseeBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)TennesseeBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)






Anencephalus 341.6

81.2

82.8

11.5

00.0

511.6


121.8

31.1

11.5

00.0

431.3


40.6

72.5

22.9

00.0

300.9


111.7

72.5

00.0

00.0

692.1


1363204.7

323113.2

5478.5

121.0

4480139.5


1095.1

426.3

144.9

34.4

121.0

1705.3

1


81.2

41.4

00.0

00.0

351.1


20.3

10.4

00.0

00.0

120.4


60.9

62.1

11.5

00.0

621.9


416.2

217.4

45.8

121.0

2788.7


466.9

248.4

22.9

00.0

2517.8


91.4

20.7

11.5

00.0

361.1


162.4

31.1

34.4

00.0

652.0


375.6

134.6

11.5

00.0

1444.5


101.5

62.1

22.9

00.0

481.5

Encephalocele 271.3

91.4

82.8

00.0

00.0

441.4


793.7

152.3

124.2

00.0

00.0

1063.3


223.3

155.3

00.0

00.0

1875.8


274.1

155.3

11.5

121.0

1253.9


360105.8

5940.5

2262.4

3127.7

1752106.5

Omphalocele 612.8

152.3

51.8

00.0

00.0

812.5


659.8

2910.2

57.3

121.0

3009.3


162.4

72.5

22.9

00.0

632.0


416.2

113.9

11.5

121.0

2006.2


446.6

144.9

22.9

00.0

1905.9


203.0

165.6

45.8

00.0

1354.2


456.8

134.6

11.5

00.0

1966.1


426.3

186.3

57.3

00.0

1755.4


643.0

182.7

93.2

45.8

00.0

953.0


91.4

31.1

00.0

00.0

461.4

2




TennesseeBirth Defects Counts and Prevalence 2009 - 2012 (Prevalence per 10,000 Live Births)






Trisomy 13 160.7

81.2

00.0

00.0

00.0

260.8

Trisomy 18 381.8

132.0

62.1

11.5

00.0

591.8


9314.0

5017.5

913.1

121.0

45614.2


34952.4

16256.8

2942.2

362.9

166751.9

3


66592.

28538.

6877.

477.

321118.


34031.

14579.

3528.

235.

164532.





TennesseeTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2012 (Prevalence per 10,000 Live Births)TennesseeTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2012 (Prevalence per 10,000 Live Births)



6.510.3

1875.8

Trisomy 13 200.7

61.8

260.8

Trisomy 18 421.5

175.0

591.8


17852.7

45614.2


33782.

321118.


Notes1.Data for this condition includes inlet ventricular septal defect.2.Data for this condition includes stenosis or hypoplasia.3.Data for this condition includes inlet ventricular septal defect and probable cases.

General comments-Fetal deaths are defined as 500 grams or more, or 22 weeks gestation or more.




TexasBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)TexasBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 1592.4

321.5

3153.3

70.8

38.3

5272.7


462.1

3253.5

192.3

00.0

5773.0


271.2

4735.0

182.2

25.6

6733.5


311.4

2823.0

111.3

25.6

4962.6


185684.2

768781.7

54064.8

2672.3

1533079.3


3304.9

1024.6

3894.1

303.6

12.8

8574.4


120.5

670.7

141.7

12.8

1360.7


70.3

100.1

10.1

00.0

370.2


291.3

1061.1

60.7

00.0

2581.3


552.5

2592.8

263.1

12.8

6023.1


924.2

7958.5

576.8

925.0

14057.3


984.4

5636.0

667.9

411.1

11606.0


00.0

80.1

00.0

00.0

120.1

Clubfoot 113117.0

36316.5

157916.8

799.5

1130.6

319216.5


1064.8

5225.5

364.3

411.1

10565.5


180.8

931.0

40.5

00.0

1640.8


452.0

1862.0

101.2

00.0

3611.9


391.8

550.6

161.9

00.0

1760.9


642.9

5806.2

283.4

25.6

11926.2


190.9

860.9

50.6

25.6

1630.8


542.5

2793.0

192.3

12.8

5462.8


401.8

2772.9

161.9

12.8

4692.4


70.3

800.9

30.4

00.0

1410.7

Encephalocele 510.8

291.3

1081.1

121.4

00.0

2051.1


1832.7

421.9

2012.1

141.7

12.8

4422.3


994.5

6526.9

253.0

25.6

11556.0


180.8

1051.1

40.5

00.0

1800.9


572.6

2032.2

121.4

12.8

4582.4


83274.1

214144.7

26962.2

843.7

631763.9


140.6

530.6

20.2

00.0

1120.6




TexasBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







1476.7

5686.0

222.6

411.1

11255.8

Omphalocele 1572.4

532.4

1791.9

172.0

00.0

4072.1


24211.0

116712.4

566.7

513.9

213411.0


231.0

1001.1

81.0

00.0

2001.0


1044.7

5515.9

334.0

411.1

10305.3


1607.3

6236.6

607.2

38.3

12936.7


150.7

860.9

50.6

00.0

1510.8


743.4

3423.6

182.2

12.8

6613.4


612.8

4364.6

141.7

12.8

7694.0


1125.1

4224.5

394.7

38.3

9004.7


811.2

221.0

2052.2

192.3

00.0

3291.7


562.5

3433.6

253.0

00.0

6903.6


2263.4

482.2

2993.2

222.6

00.0

5983.1


532.4

1831.9

151.8

12.8

3852.0


241.1

640.7

70.8

00.0

1510.8

Trisomy 13 911.4

281.3

1101.2

151.8

00.0

2481.3

Trisomy 18 1832.7

562.5

2552.7

283.4

00.0

5302.7


22910.4

157016.7

9711.6

411.1

280214.5


201.8

1282.8

102.5

00.0

2632.8


116953.1

715576.1

47256.6

3083.4

1285966.5

1


220352.

940681.

83368.

3596.

1934167.


112219.

479127.

43267.

1832.

988179.


108133.

461554.

40101.

1764.

945988.





TexasTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)TexasTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



6.7190.8

11556.0

Trisomy 13 1751.0

733.0

2481.3

Trisomy 18 2721.6

25810.5

5302.7


133054.3

280214.5


244749.

1934167.


Notes1.Data for this condition include inlet ventricular septal defect.

General comments-Data for all conditions exclude possible/probable cases.-Fetal death defined as spontaneous death of a conception product prior to the complete expulsion/extraction from its mother, regardless of gestationallength. The labor onset may be natural/induced, but not a result of an intended procedure.




UtahBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)UtahBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 472.3

27.4

153.8

11.1

13.5

672.6


13.7

41.0

00.0

00.0

90.3


27.4

287.0

1011.2

13.5

1023.9


00.0

153.8

44.5

13.5

823.2


1348.1

18546.6

5056.0

1242.1

110842.7


1487.3

414.8

225.5

1314.6

13.5

1887.2


00.0

20.5

11.1

00.0

170.7


00.0

00.0

11.1

00.0

50.2


00.0

41.0

00.0

00.0

371.4


311.1

133.3

44.5

13.5

1425.5


311.1

399.8

22.2

310.5

2118.1


27.4

143.5

1011.2

414.0

1525.9


00.0

00.0

11.1

00.0

100.4

Clubfoot 00.0

00.0

00.0

00.0

00.0

00.0


27.4

287.0

55.6

414.0

2469.5


13.7

20.5

11.1

00.0

200.8


00.0

123.0

33.4

13.5

752.9


00.0

51.3

11.1

00.0

351.3

1


311.1

4511.3

55.6

414.0

28110.8


13.7

30.8

66.7

310.5

341.3


13.7

61.5

22.2

27.0

461.8


00.0

51.3

22.2

13.5

491.9


00.0

51.3

11.1

00.0

271.0

Encephalocele 201.0

00.0

30.8

00.0

00.0

230.9


542.7

00.0

92.3

33.4

27.0

692.7

Gastroschisis 773.8

00.0

194.8

44.5

13.5

1023.9


27.4

71.8

00.0

00.0

361.4


27.4

82.0

44.5

13.5

793.0


750.0

5125.3

2452.0

748.7

90267.6


13.7

41.0

33.4

13.5

180.7




UtahBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







414.8

266.5

22.2

13.5

1606.2

Omphalocele 623.1

13.7

174.3

11.1

310.5

843.2


518.5

5714.3

1719.0

414.0

37014.3


00.0

41.0

22.2

00.0

230.9


13.7

92.3

910.1

00.0

973.7


00.0

133.3

55.6

310.5

963.7


00.0

30.8

00.0

00.0

130.5


00.0

51.3

44.5

00.0

381.5


27.4

133.3

33.4

27.0

863.3


13.7

92.3

55.6

310.5

813.1


190.9

00.0

82.0

00.0

13.5

281.1


13.7

184.5

44.5

13.5

1305.0


502.5

13.7

82.0

33.4

00.0

622.4


13.7

71.8

00.0

00.0

341.3


13.7

71.8

00.0

00.0

341.3

Trisomy 13 311.5

13.7

92.3

22.2

00.0

431.7

Trisomy 18 713.5

13.7

143.5

22.2

27.0

933.6


414.8

7919.9

2224.6

517.5

41716.1


00.0

126.1

00.0

17.1

584.6


829.6

12431.2

2022.4

621.0

64624.9


2703.

39722.

8927.

2852.

259509.


1399.

20175.

4611.

1438.

133356.


1304.

19547.

4316.

1414.

126151.





UtahTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)UtahTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



4.320.7

1023.9

Trisomy 13 281.2

155.2

431.7

Trisomy 18 612.6

3211.1

933.6


20169.7

41716.1


28840.

259509.


Notes1.Data for this condition include congenital posterior urethral valves or posterior urethral obstruction only.

General comments-Data for 2013 are provisional.-Stillbirths are based on >=20 weeks gestation.-Terminations include any weeks' gestation.




VermontBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)VermontBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 20.7

00.0

00.0

00.0

00.0

20.7


00.0

00.0

116.2

00.0

51.6


00.0

124.4

00.0

00.0

196.3


4102.6

6146.3

464.8

1243.9

24279.6


165.6

00.0

00.0

00.0

00.0

165.3


00.0

00.0

116.2

00.0

20.7


00.0

00.0

00.0

00.0

185.9


00.0

00.0

00.0

00.0

134.3


00.0

124.4

00.0

00.0

289.2


00.0

00.0

00.0

00.0

216.9


00.0

124.4

00.0

00.0

20.7


00.0

00.0

00.0

00.0

134.3


00.0

00.0

00.0

00.0

41.3


00.0

00.0

00.0

00.0

10.3

Encephalocele 00.0

00.0

00.0

00.0

00.0

00.0


93.2

00.0

00.0

116.2

00.0

103.3

Gastroschisis 113.9

00.0

00.0

00.0

00.0

123.9


00.0

00.0

00.0

00.0

93.0


3154.6

00.0

00.0

00.0

11975.1

Omphalocele 41.4

125.6

00.0

00.0

00.0

51.6


125.6

124.4

116.2

00.0

5116.8


125.6

00.0

00.0

00.0

31.0


00.0

00.0

00.0

00.0

185.9


00.0

00.0

116.2

00.0

206.6


00.0

00.0

116.2

00.0

113.6

1


00.0

00.0

00.0

00.0

62.0


125.6

00.0

116.2

00.0

123.9


00.0

00.0

116.2

00.0

82.6


51.8

00.0

00.0

116.2

00.0

62.0


00.0

00.0

00.0

00.0

20.7




VermontBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Trisomy 13 00.0

00.0

00.0

00.0

00.0

00.0

Trisomy 18 62.1

00.0

00.0

00.0

00.0

62.0


00.0

00.0

116.2

00.0

3310.9


5128.2

373.2

348.6

00.0

19664.5


390.

410.

617.

41.

30391.


194.

207.

332.

21.

15848.





VermontTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)VermontTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



4.700.0

123.9

Trisomy 13 00.0

00.0

00.0

Trisomy 18 31.2

36.1

62.0


1530.5

3310.9


4917.

30391.


Notes1.Data for this condition include only small intestinal atresia.




VirginiaBirth Defects Counts and Prevalence 2009 - 2011 (Prevalence per 10,000 Live Births)VirginiaBirth Defects Counts and Prevalence 2009 - 2011 (Prevalence per 10,000 Live Births)






Anencephalus 181.0

50.7

71.8

41.8

00.0

361.2


81.2

20.5

20.9

123.1

170.5


91.3

61.6

10.4

00.0

290.9


91.3

92.3

10.4

00.0

451.4


843126.3

603156.1

335150.2

492.4

3473111.9


522.9

385.7

133.4

41.8

00.0

1083.5


40.6

10.3

00.0

00.0

140.5


00.0

00.0

00.0

00.0

20.1


81.2

61.6

10.4

00.0

361.2


131.9

102.6

31.3

00.0

742.4


274.0

318.0

135.8

00.0

1464.7


223.3

174.4

104.5

00.0

1685.4


517.6

215.4

104.5

00.0

1805.8

Clubfoot 17910.0

558.2

4010.4

125.4

00.0

2899.3


395.8

153.9

125.4

00.0

1545.0


91.3

20.5

00.0

00.0

230.7


121.8

41.0

31.3

00.0

311.0


162.4

51.3

20.9

00.0

461.5


20.3

00.0

00.0

00.0

50.2


162.4

112.8

00.0

00.0

692.2


182.7

92.3

83.6

00.0

662.1


81.2

92.3

10.4

00.0

301.0

Encephalocele 80.4

50.7

61.6

20.9

00.0

210.7


331.8

192.8

61.6

31.3

00.0

612.0

Gastroschisis 593.3

223.3

164.1

31.3

00.0

1003.2


324.8

133.4

62.7

123.1

1234.0


182.7

112.8

41.8

00.0

702.3


18153.4

6332.0

5346.2

145.5

90056.6


91.3

20.5

00.0

00.0

160.5


172.5

71.8

41.8

00.0

792.5




VirginiaBirth Defects Counts and Prevalence 2009 - 2011 (Prevalence per 10,000 Live Births)






Omphalocele 150.8

101.5

30.8

31.3

00.0

311.0


9814.7

6015.5

4319.3

123.1

37412.0


274.0

236.0

83.6

00.0

1314.2


314.6

133.4

41.8

00.0

1143.7


121.8

20.5

10.4

00.0

391.3


263.9

153.9

62.7

00.0

1143.7


172.5

174.4

31.3

00.0

742.4


466.9

153.9

125.4

123.1

1514.9


181.0

20.3

51.3

52.2

00.0

301.0


334.9

92.3

125.4

00.0

1294.2


121.8

102.6

41.8

00.0

601.9

Trisomy 13 100.6

30.4

51.3

10.4

123.1

200.6

Trisomy 18 181.0

121.8

133.4

10.4

00.0

441.4


9714.5

7018.1

177.6

369.3

39012.6


51.5

52.6

10.9

00.0

251.7


28743.0

23961.9

10948.9

10230.9

143846.3

1


66723.

38628.

22297.

433.

310438.


33893.

19683.

11469.

220.

159053.


32829.

18945.

10827.

213.

151378.





VirginiaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2011 (Prevalence per 10,000 Live Births)VirginiaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2011 (Prevalence per 10,000 Live Births)



3.810.2

1003.2

Trisomy 13 80.3

122.3

200.6

Trisomy 18 180.7

265.1

441.4


16532.3

39012.6


51126.

310438.


Notes1.Data for this condition exclude probable cases.

General comments-Fetal death defined as death prior to the complete expulsion or extraction from its mother of a product of human conception, irrespective of the durationof pregnancy.




West VirginiaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)West VirginiaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 445.2

00.0

19.5

00.0

00.0

465.0


00.0

00.0

00.0

00.0

10.1


00.0

00.0

00.0

00.0

30.3


00.0

00.0

00.0

00.0

171.8


69209.9

766.2

879.6

00.0

1590172.4


273.2

26.1

00.0

00.0

00.0

303.3


13.0

00.0

00.0

00.0

80.9


00.0

00.0

00.0

00.0

10.1


13.0

00.0

00.0

00.0

121.3


00.0

00.0

00.0

00.0

10.1


13.0

00.0

00.0

00.0

535.7


00.0

00.0

00.0

00.0

727.8


26.1

00.0

110.0

00.0

333.6

Clubfoot 17020.2

412.2

19.5

00.0

00.0

18119.6


00.0

00.0

00.0

00.0

454.9


39.1

00.0

110.0

00.0

869.3


00.0

00.0

110.0

00.0

50.5


13.0

00.0

00.0

00.0

40.4


00.0

00.0

00.0

00.0

20.2


13.0

00.0

00.0

00.0

283.0


26.1

00.0

00.0

00.0

262.8


00.0

00.0

00.0

00.0

171.8

Encephalocele 30.4

00.0

00.0

00.0

00.0

30.3


161.9

26.1

00.0

00.0

00.0

212.3

Gastroschisis 42.4

00.0

00.0

00.0

00.0

42.2

1


00.0

00.0

00.0

00.0

465.0


26.1

00.0

00.0

00.0

212.3


1059.2

00.0

00.0

00.0

25754.7


13.0

00.0

00.0

00.0

70.8


13.0

00.0

00.0

00.0

171.8




West VirginiaBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Omphalocele 31.8

00.0

00.0

00.0

00.0

31.6

1


00.0

00.0

110.0

00.0

606.5


00.0

00.0

00.0

00.0

111.2


00.0

00.0

00.0

00.0

424.6


13.0

00.0

00.0

00.0

434.7


00.0

00.0

00.0

00.0

80.9


00.0

00.0

00.0

00.0

343.7


00.0

00.0

110.0

00.0

293.1


26.1

19.5

00.0

00.0

444.8


70.8

00.0

00.0

110.0

00.0

80.9


00.0

00.0

00.0

00.0

293.1


253.0

00.0

00.0

00.0

00.0

252.7


00.0

00.0

00.0

00.0

50.5

Trisomy 13 50.6

13.0

00.0

00.0

00.0

70.8

Trisomy 18 131.5

26.1

00.0

00.0

00.0

151.6


39.1

19.5

110.0

00.0

748.0


00.0

00.0

00.0

00.0

30.7


1236.5

00.0

329.9

00.0

37240.3


3287.

1058.

1005.

86.

92246.


1690.

536.

508.

40.

46943.


1597.

522.

497.

46.

45303.





West VirginiaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)West VirginiaTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



2.400.0

42.2

1

Trisomy 13 60.7

00.0

70.8

Trisomy 18 101.2

55.6

151.6


2022.4

748.0


8936.

92246.


Notes1.Data for this condition begin in 2013.

General comments-Probable cases are included.




WisconsinBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)WisconsinBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)






Anencephalus 220.9

30.9

41.3

32.1

24.6

341.1


00.0

10.3

00.0

00.0

100.3


20.6

92.8

10.7

12.3

300.9


30.9

00.0

00.0

12.3

220.7


14946.5

15347.8

5739.1

3888.3

154348.2


451.9

41.2

61.9

21.4

00.0

591.8


00.0

00.0

00.0

00.0

20.1


00.0

10.3

00.0

00.0

70.2


10.3

41.3

21.4

00.0

371.2


51.6

72.2

53.4

00.0

852.7


82.5

92.8

42.7

00.0

712.2


92.8

154.7

106.9

49.3

1725.4


144.4

123.8

85.5

00.0

1263.9

Clubfoot 37316.0

3611.2

3510.9

106.9

511.6

46814.6


92.8

82.5

10.7

12.3

902.8


00.0

20.6

00.0

00.0

70.2


10.3

51.6

00.0

12.3

230.7


30.9

10.3

32.1

24.6

210.7


00.0

00.0

00.0

00.0

00.0


00.0

00.0

00.0

00.0

20.1


30.9

61.9

10.7

24.6

642.0


41.2

41.3

00.0

00.0

300.9


00.0

00.0

10.7

12.3

150.5

Encephalocele 70.3

00.0

20.6

10.7

00.0

110.3


451.9

61.9

51.6

32.1

00.0

611.9


92.8

61.9

32.1

12.3

812.5


61.9

20.6

00.0

12.3

341.1


11369.7

6238.1

2735.9

835.9

113769.4


10.3

00.0

21.4

12.3

120.4


92.8

103.1

53.4

24.6

1023.2




WisconsinBirth Defects Counts and Prevalence 2009 - 2013 (Prevalence per 10,000 Live Births)







113.4

51.6

21.4

12.3

632.0


00.0

00.0

10.7

00.0

50.2


51.6

82.5

53.4

24.6

963.0


103.1

82.5

42.7

00.0

1544.8


00.0

00.0

00.0

12.3

30.1


123.7

113.4

64.1

511.6

1053.3


92.8

123.8

32.1

12.3

832.6


82.5

82.5

53.4

00.0

611.9


30.1

10.3

10.3

00.0

00.0

50.2


20.6

51.6

00.0

24.6

431.3


180.8

20.6

20.6

00.0

24.6

260.8


00.0

10.3

10.7

00.0

70.2

Trisomy 13 150.6

10.3

20.6

21.4

00.0

210.7

Trisomy 18 622.7

51.6

72.2

32.1

00.0

802.5


226.9

4915.3

2215.1

49.3

35811.2


21.3

00.0

00.0

00.0

120.8


6921.5

11034.4

3725.4

1534.9

83326.0


32069.

31983.

14571.

4303.

319903.


16204.

16258.

7522.

2230.

163784.


15865.

15725.

7049.

2073.

156119.





WisconsinTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)WisconsinTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2013 (Prevalence per 10,000 Live Births)



0.492.2

210.7

Trisomy 18 451.6

358.6

802.5


17442.6

35811.2


40879.

319903.


General comments-Fetal deaths defined as 20 weeks or greater gestation.




Department of DefenseBirth Defects Counts and Prevalence 2009 - 2010.13 (Prevalence per 10,000 Live Births)Department of DefenseBirth Defects Counts and Prevalence 2009 - 2010.13 (Prevalence per 10,000 Live Births)






Anencephalus 310.8

40.5

30.4

10.3

10.9

400.7


192.3

111.6

93.1

21.9

981.6


91.1

253.7

155.2

32.8

1382.3


243.0

131.9

51.7

43.8

1973.2


917112.8

716105.5

24684.6

8681.1

6410104.9

1


2556.2

556.8

314.6

124.1

10.9

3585.9

2


162.0

121.8

20.7

21.9

701.1


10.1

00.0

00.0

00.0

230.4


192.3

182.7

51.7

21.9

1522.5


334.1

334.9

289.6

76.6

4216.9


445.4

456.6

289.6

98.5

4807.9


688.4

6910.2

3712.7

1110.4

69711.4


647.9

497.2

165.5

87.5

4938.1

Clubfoot 90422.1

16019.7

13820.3

4615.8

2119.8

129221.2


718.7

416.0

206.9

1211.3

5869.6


172.1

91.3

72.4

10.9

1332.2


323.9

304.4

82.8

21.9

2103.4


121.5

71.0

51.7

43.8

1171.9


91.1

60.9

10.3

21.9

601.0


415.0

294.3

144.8

76.6

2734.5


263.2

223.2

113.8

10.9

1933.2


91.1

91.3

31.0

32.8

851.4

Encephalocele 431.1

81.0

91.3

10.3

32.8

651.1


1182.9

253.1

152.2

51.7

10.9

1652.7


182.8

437.9

114.6

55.9

3026.1

3


384.7

375.5

134.5

109.4

4116.7


384.7

192.8

72.4

21.9

2614.3


415100.2

26175.1

13791.1

58107.4

3292104.7


101.2

40.6

41.4

10.9

761.2


526.4

405.9

82.8

54.7

3455.6




Department of DefenseBirth Defects Counts and Prevalence 2009 - 2010.13 (Prevalence per 10,000 Live Births)






Omphalocele 692.1

182.8

91.6

41.7

00.0

1012.0

3


20925.7

13119.3

4515.5

1312.3

114818.8


293.6

172.5

72.4

00.0

1702.8


394.8

345.0

237.9

43.8

3746.1


526.4

487.1

227.6

54.7

4066.6


283.4

152.2

51.7

10.9

1762.9


627.6

375.5

134.5

54.7

3505.7


313.8

284.1

72.4

1211.3

2824.6


577.0

476.9

279.3

43.8

3916.4


551.3

192.3

131.9

51.7

00.0

951.6


172.1

162.4

124.1

10.9

2113.5


1463.6

151.8

162.4

124.1

10.9

1953.2


202.5

71.0

72.4

00.0

1131.8

Trisomy 13 380.9

192.3

81.2

20.7

00.0

681.1

Trisomy 18 671.6

202.5

142.1

10.3

00.0

1051.7


9711.9

9113.4

3311.4

1110.4

85213.9


51.3

72.1

21.4

23.8

702.4


53966.3

47770.3

17459.8

6965.1

444372.7

4


81279.

67847.

29074.

10604.

610830.


41415.

34761.

15037.

5400.

314557.


39864.

33086.

14037.

5204.

296273.





Department of DefenseTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2010.13 (Prevalence per 10,000 Live Births)Department of DefenseTrisomy and Gastroschisis Counts and Prevalence by Maternal Age 2009 - 2010.13 (Prevalence per 10,000 Live Births)



6.520.4

3026.1

3

Trisomy 13 420.8

244.3

681.1

Trisomy 18 661.2

346.1

1051.7


31055.5

85213.9


55831.

610830.


Notes1.Data for this condition include patent foramen ovale.2.Data for this condition include inlet ventricular septal defect.3.Data for this condition begin in 2010.4.Data for this condition include inlet ventricular septal defect and probable ventricular septal defect.

General comments-Data for conditions include live births only-Race/ethnicity for the Department of Defense Birth and Infant Health Registry is based on the military parent through whom the infant receives militaryhealth care benefits. This may be the infant's mother or father.




STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY

Updated August 2016

Prepared by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention

Acknowledgement: State birth defects program directors provided the information for the directory. Their names can be found under the 'contact' section of each state profile.




Alabama

Program status: No surveillance program ContactsRachael Montgomery, BSN, RN Alabama Department of Public Health 201 Monroe Street Montgomery, Alabama 36104 Phone: 334-206-5955 Fax: 334-206-3791 E-mail: [email protected]




Alaska

Alaska Birth Defects Registry (ABDR )

Purpose: Surveillance, Research Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 1996 Earliest year of available data: 1996 Organizational location: Department of Health (Epidemiology/Environment, Maternal and Child Health) Population covered annually: 11,000 Statewide: YesCurrent legislation or rule: 7 AAC 27.012 Legislation year enacted: 1996

Case DefinitionOutcomes covered: Selected major birth defects based on ICD-10-CM code list Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Birth to sixth birthday Residence: In and out of state births to Alaska residents

Surveillance MethodsCase ascertainment: Passive case-finding with case confirmation Vital Records: Birth certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Genetics clinics, specialty clinics (heart, cleft lip/palate, neurodevelopmental), MIMR (FIMR), public health nursing, Alaska Dept. of Behavioral Health (AKAIMS) Delivery Hospitals: Reports are generated by the health information management departments, within hospitals and health care facilities, for any child encountered with a reportable ICD-10 code. Pediatric & tertiary care hospitals: Reports are generated by the health information management departments, within hospitals and health care facilities, for any child encountered with a reportable ICD-10 code. Third party payers: Medicaid databases, Indian health services Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports, Alaska Health Information Exchange, AK AIMS (Alaska Dept. of Behavioral Health)

Case AscertainmentConditions warranting chart review in the newborn period: All Codes included in the current NBDPN list of birth defects listing (see: http://www.nbdpn.org/docs/Appendix_3_1_BirthDefectsDescriptions2015.pdf) are sampled for review. Other collected conditions/codes will are sampled and reviewed based upon incoming requests and/or need. Coding: ICD-10-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access

Data AnalysisData analysis software: SAS, Access, R Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Rates by demographic and other variables, Time trends, Needs assessment, Grant proposals, Education/public awareness

System integrationSystem links: Link case finding data to final birth file System integration: No.

FundingFunding source: 20% General state funds, 80% MCH funds

OtherWeb site: http://dhss.alaska.gov/dph/wcfh/Pages/mchepi/abdr/default.aspxSurveillance reports on file: Http://dhss.alaska.gov/dph/wcfh/Pages/mchepi/mchdatabook/default.aspx

ContactsKit Coleman, BS State of Alaska, Division of Public Health 3601 C Street, Suite 358 Anchorage, AK 99503 Phone: 907-269-8097 Fax: 907-269-3493 E-mail: [email protected]

Jared Parrish, PhD State of Alaska, Division of Public Health 3601 C Street, Suite 358 Anchorage, AK 99503 Phone: 907-269-8068 Fax: 907-269-3493 E-mail: [email protected]




Arizona

Arizona Birth Defects Monitoring Program (ABDMP )

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1986 Earliest year of available data: 1986 Organizational location: Department of Health (Public Health Statistics) Population covered annually: 87,000 Statewide: YesCurrent legislation or rule: Legislation enacted 1988; Rule effective 1991 Statute: 36-133; Rule: Arizona Administrative Code R9-4-Article 5 Legislation year enacted: 1988

Case DefinitionPregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (Any gestational age or weight if a fetal death certificate was issued) Age: Up to one year after delivery. If the nature of a defect diagnosed in the first year of life is more precisely diagnosed later in the child's life, and this information is contained in the chart at the time of our review, then the more precise diagnosis and information is used. Residence: Arizona birth to an Arizona resident mother

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates, Fetal birth certificate, Hospital Discharge Database Delivery Hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Disease index or discharge index Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities Other sources: Midwifery Facilities

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: CDC coding system based on BPA

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staffDatabase collection and storage: Access, Oracle

Data AnalysisData analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file

FundingFunding source: 17% General state funds, 20% MCH funds, 63% CDC grant

OtherWeb site: http://azdhs.gov/phs/phstats/bdr/index.htm and azhealth.gov/birth-defects Surveillance reports on file: Annual Reports Additional information on file: Fact Sheets; Resources Other comments: To contact the ABDMP email [email protected]

ContactsTimothy J. Flood, M.D. Arizona Department of Health Services 150 North 18th Avenue, Suite 550 Phoenix, AZ 85007 Phone: 602-542-7331 Fax: 602-364-0082 E-mail: [email protected]

Dianna Contreras Arizona Department of Health Services 150 North 18th Avenue, Suite 550 Phoenix, AZ 85007 Phone: 602-542-7335 Fax: 602-542-7447 E-mail: [email protected]




Arkansas

Arkansas Reproductive Health Monitoring System (ARHMS )

Purpose: Surveillance, Research Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Legislators Program status: Currently collecting data Start Year: 1980 Earliest year of available data: 1980 Organizational location: UniversityPopulation covered annually: 40,000 Statewide: YesCurrent legislation or rule: Acts 1985, No. 214 Legislation year enacted: 1985

Case DefinitionOutcomes covered: Major congenital malformations, 740.000-759.990, plus select others outside this range Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Birth to second birthday Residence: In and out of state births to Arkansas residents

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates Delivery Hospitals: Disease index or discharge index, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or charts, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics, Reports are generated by the health information management departments, within hospitals and health care facilities, for any child encountered with a reportable ICD-9 code. Pediatric & tertiary care hospitals: Disease index or discharge index, ICU/NICU logs or charts, Cardiac catheterization laboratories, Specialty outpatient clinics, Reports are generated by the health information management departments, within hospitals and health care facilities, for any child encountered with a reportable ICD-9 code. Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: CDC coding system based on BPA

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal diagnostic information Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Access

Data AnalysisData analysis software: SAS, Access, STATA Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file System integration: No

FundingFunding source: 100% General state funds

OtherWeb site: http://arbirthdefectsresearch.uams.edu/Surveillance reports on file: Online data query system available through the Arkansas Department of Health: http://www.healthy.arkansas.gov/programsServices/healthStatistics/Pages/Statistics.aspx

ContactsWendy Nembhard, PhD, MPH ARHMS, Section of Birth Defect Research, AR Children's Research Institute13 Children's Way, Slot 512-40 Little Rock, AR 72202 Phone: 501-364-5000 Fax: 501-364-5107 E-mail: [email protected]

Charlotte Hobbs, MD, PhD ARHMS, Section of Birth Defect Research, AR Children's Research Institute13 Children's Way, Slot 512-40 Little Rock, AR 72202 Phone: 501-364-5000 Fax: 501-364-5107 E-mail: [email protected]




California

California Birth Defects Monitoring Program (CBDMP )

Purpose: Surveillance, Research Partner: Local Health Departments, Hospitals, Universities Program status: Currently collecting data Start Year: 1983 Earliest year of available data: 1983 Organizational location: Department of Health (Genetic Disease Screening Program, Center for Family Health) Population covered annually: 70,000 Statewide: No, CBDMP currently monitors a sampling of California births that are demographically similar to the state as a whole and whose birth defects rates and trends have been reflective of those throughout California. Furthermore, CBDMP has statutory authority to conduct active surveillance anywhere in the state when warranted by environmental incidents or concerns. Current legislation or rule: California Health and Safety Code, Division 102, Part 2, Chapter 1, Sections 103825-103855, effective 1982, recodified 1996 Legislation year enacted: 1982

Case DefinitionPregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: One year Residence: In-state births to residents of counties monitored by CBDMP

Surveillance MethodsCase ascertainment: Active Case Finding Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinicsPediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, All neonatal deaths, All elective abortions, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, Failure to thrive, GI condition (e.g. intestinal blockage), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Any infant with a codable defect Coding: CDC BPA codes but modified for use in California

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditionsFather: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: SQL server

Data AnalysisData analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Validity checks are done on all abstracts Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Grant proposals, Education/public awareness

System integrationSystem links: Link case finding data to final birth file, Hospital discharge. CBDMP links case finding data to final vital statistics fetal death files

FundingFunding source: 100% CBDMP Special FundWeb site: www.cdph.ca.gov/programs/CBDMPSurveillance reports on file: Birth defect fact sheets and California regional birth defect data available on the website. Additional information on file: Please send inquiries to [email protected]

ContactsBarbara Warmerdam California Birth Defects Monitoring Program/Genetic Disease Screening Program 1615 Capitol Avenue Sacramento, CA 95814 Phone: 916-341-6677 Fax: 916-341-6499 E-mail: [email protected]

Richard Olney, MD, MPH Genetic Disease Screening Program California Department of Public Health 850 Marina Bay Parkway, F-175 Richmond, CA 94804 Phone: 510-231-7408 Fax: 510-412-1551 E-mail: [email protected]




Centers for Disease Control and Prevention (Metropolitan Atlanta Congenital Defects Program)

Metropolitan Atlanta Congenital Defects Program (MACDP )

Purpose: Surveillance, Research Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Laboratories, Prenatal Diagnostic Providers Program status: Currently collecting data Start Year: 1967 Earliest year of available data: 1968 Organizational location: CDC, National Center on Birth Defects and Developmental Disabilities Population covered annually: 35,000 Statewide: No, Births to mothers residing within one of three central counties in the metropolitan Atlanta area of the state of Georgia

Case DefinitionOutcomes covered: All major structural and genetic birth defects Pregnancy outcome: Livebirths (>=20 weeks), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (All gestational ages) Age: Before 6 years of age Residence: Births to mothers residing in one of three central metropolitan Atlanta counties

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates, Fetal birth certificate Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Induction logs and miscarriage logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with a CDC/BPA code, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, Infants with low birth weight or low gestation (Birth weight < 2500 grams and/or 20-36 weeks gestation ), All stillborn infants, All neonatal deaths, All elective abortions, All infants with low APGAR scores, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), Cardiovascular condition, All infant deaths (excluding prematurity), Any infant with a codable defect Coding: CDC coding system based on BPA

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Access, SQL Server, SAS

Data AnalysisData analysis software: SPSS, SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Education/public awareness, Prevention projects, Survival analysis

System integrationSystem links: Link case finding data to final birth file, National Death Index; Death and Fetal Death Records; Laboratory Records

FundingFunding source: 100% Intramural CDC fundingWeb site: http://www.cdc.gov/ncbddd/bd/macdp.htmSurveillance reports on file: MACDP 40th Anniversary Surveillance Report Additional information on file: CDC/BPA Defect Code; Including prenatal diagnoses in BD monitoring

Comments: The 40th Anniversary Surveillance Report was published: Correa A, Cragan JD, Kucik JE, et al. Reporting birth defects surveillance data 1968-2003. Birth Defects Research Part A. 2007;79(2):65-186.

ContactsJanet D. Cragan, MD, MPH Centers for Disease Control and Prevention 1600 Clifton Rd., MS E-86 Atlanta, GA 30333 Phone: 404-498-3807 Fax: 770-488-3263 E-mail: [email protected]




Colorado

Colorado Responds to Children with Special Needs Section (CRCSN )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 1988 Earliest year of available data: 1989 Organizational location: Department of Health (Vital Statistics, Center for Health and Environmental Data (CHED)) Population covered annually: 66,545 (2015) Statewide: YesCurrent legislation or rule: Colorado Revised Statutes (CRS) 25-1.5-101.25-1.5-105 Legislation year enacted: 1985

Case DefinitionOutcomes covered: Structural birth defects, fetal alcohol syndrome,selected genetic and metabolic disorders; muscular dystrophy;selected developmental disabilities; very low birth weight (less than 1500 grams);others with medical risk factors for developmental delay. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages, Less than 20 weeks gestation, 20 weeks gestation and greater) Age: Up to the 5th birthday (up to 10th birthday for fetal alcohol syndrome) Residence: Events occurring in-state- or out-of-state Colorado residents

Surveillance MethodsCase ascertainment: Active Case Finding, Passive case-finding with case confirmation Vital Records: Birth certificates, Death certificates, Fetal birth certificate Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Postmortem/pathology logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Postmortem/pathology logs, Specialty outpatient clinics Third party payers: Medicaid databases Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetic facilities Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: All stillborn infants, Selected chart reviews for prenatal to age 3: for statistical trends monitoring (23 conditions-catagories); fetal alcohol syndrome ( to age 10), active case ascertainment data sources Coding: ICD-9-CM, Extended code utilized to describe syndromes, further detail of a condition and to specify status.

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Gravidity/parity, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), 99% of data are collected in electronic format

Data AnalysisData analysis software: Epi-Info, SAS, Access, Arcview (GIS software) ; Maptitude, SaTScan, Centrus Quality assurance: Re-abstraction of cases, Comparison/verification between multiple data sources, Clinical review, Timeliness, Records linkage and de-duplication Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects, Environmental Studies

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases

FundingFunding source: 26% General state funds, 30% Service fees, 43% CDC grant

OtherWeb site: http://www.cdphe.state.co.us

ContactsMargaret Frances Ruttenber, MSPH Colorado Respond to Children with Special Need Section 4300 Cherry Creek Drive, South Denver, Colorado 80246-1530 Phone: 303-692-2636 Fax: 303-691-7821 E-mail: [email protected]

Carol Stanton, MBA Colorado Respond to Children with Special Need Section 4300 Cherry Creek Drive, South Denver, Colorado 80246-1530 Phone: 303-692-2621 Fax: 303-691-7821 E-mail: [email protected]




Connecticut

Connecticut Birth Defects Registry (CT BDR )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Reporting for MCH Block Grant Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 2002 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health)Population covered annually: 37,000 Statewide: YesCurrent legislation or rule: Sec. 19a-53. (Formerly Sec. 19-21). Reports of physical defects of children. Sec. 19a-54. (Formerly Sec. 19-21a). Registration of physically handicapped children. Sec. 19a-56a birth defects data. (Formerly Sec. 10a-132b). Birth defects surveillance program. Sec. 19a-56b (formerly Sec. 10a-132d). Confidentiality of birth defects information. Access.

Case DefinitionOutcomes covered: All major structural birth defects; biochemical, genetic and hearing impairment through linkage with Newborn Screening System; any condition which places a child at risk for needing specialized medical care (i.e., complications of prematurity, cancer, trauma, etc.) ICD-9 codes 740 thru 759.9 and 760.71. ICD10 codes include the entire Q series as well as some recommended by CDC in the provided crosswalk.Pregnancy outcome: Livebirths (All gestational ages and birth weights, PDA = to 2500 gms birth weight) Age: Up to one year after delivery for birth defects, but reported up to age 5Residence: All in-state births are reported but reporting is cone on in-state births to state residents

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation, microcephaly is currently rapid assertainment (within 12 hours of birth) and referred to the CT DPH Infectious Disease program for follow-up. Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate, inpatient hospitalizations and emergency room visitsOther state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Developmental Disabilities Surveillance Delivery Hospitals: Disease index or discharge index, Discharge summaries, Reports from health care professionals in newborn nurseries and NICUs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Reports from health care professionals in pediatric inpatient and outpatient services planned for future Other sources: Midwifery Facilities, Physician reports, Mandatory reporting by health care providers and facilities; CYSHCN Programs; Newborn Screening System (for genetic disorders and hearing impairment).

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease) Coding: ICD-9-CM, ICD-10-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, Mainframe, Web based database just moved to sequel server

Data AnalysisData analysis software: SAS, Access, Arc GIS Quality assurance: Validity checks, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Epidemiologic studies (using only program data), Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects, Provider education

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file System integration: We are integrated with the newborn metabolic and early hearing and detection intervention. Vital Records imports into the Maven Newborn Screening System (NSS). This database also links with the Lead program and the new Children and Youth with Special Health Care Needs program.


OtherWeb site: http://www.ct.gov/dph/birthdefectsregistrySurveillance reports on file: NBDPN annual reports, state profiles

ContactsKarin C Davis, BS Public Health Connecticut Department of Public Health 410 Capitol Avenue, MS #11MAT Hartford, CT 6134 Phone: (860) 509-7499 Fax: (860) 509-7720 E-mail: [email protected]

Marcie Cavacas Connecticut Department of Public Health 410 Capitol Avenue, MS #11 MAT Hartford, CT 6134 Phone: (860) 509-7775 Fax: (860) 509-7720 E-mail: [email protected]




Delaware

Delaware Birth Defects Registry (DBDR )

Purpose: Surveillance Partner: Local Health Departments, Hospitals, Early Childhood Prevention Programs, Birthing Centers Program status: Currently collecting data Start Year: 2007 Earliest year of available data: 2007 Organizational location: Department of Health (Maternal and Child Health)Population covered annually: 12,000 Statewide: YesCurrent legislation or rule: House Bill No. 197, an act to amend Title 16 of the Delaware Code relating to Birth Defects Legislation year enacted: 1997

Case DefinitionOutcomes covered: Selected major birth defects, selected metabolic defects, genetic diseases, and infant morality. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, Or greater than 350 grams.) Age: Birth to 1 year Residence: In-state births to state resident

Surveillance MethodsCase ascertainment: Combination of active and passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death fileOther state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Developmental Disabilities Surveillance, Cancer registry, AIDS/HIV registry Delivery Hospitals: Disease index or discharge index, Discharge summaries, Postmortem/pathology logs, Specialty outpatient clinics, High risk pregnancy logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Postmortem/pathology logs, Specialty outpatient clinicsOther specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities Other sources: Midwifery Facilities, Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, GI condition (e.g. intestinal blockage), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access

Data AnalysisData analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Capture-recapture analyses, Epidemiologic studies (using only program data), Education/public awareness

System integrationSystem links: Link to other state registries/databases, Link to Newborn Bloodspot and Hearing Screening.


OtherWeb site: http://dhss.delaware.gov/dhss/dph/chca/dphbdr1.htmlSurveillance reports on file: Analysis of the 2007 Delaware Birth Defects Registry http://dhss.delaware.gov/dhss/dph/chca/files/birthdefectsregistryreport2007.pdf

ContactsDana R Thompson, MPH Christiana Care Health System 4735 Ogletown Stanton Road Newark, DE 19718 Phone: 302-733-5032 Fax: 302-733-5044 E-mail: [email protected]




District of Columbia

Program status: No surveillance program

Surveillance MethodsOther state based registries: Newborn hearing screening program, Newborn metabolic screening program

ContactsPiia Hanson, MSPH Department of Health, Community Health Administration 899 North Capitol Street, NE 3rd Floor Washington, DC 20002 Phone: 202-442-9405 E-mail: [email protected]

Sandra A Battiste, MPH Department of Health, Community Health Administration 899 North Capitol Street, NE 3rd Floor Washington, DC 20002 Phone: 2024785820 Fax: 2026710854 E-mail: [email protected]




Florida

Florida Birth Defects Registry (FBDR )

Purpose: Surveillance, Research, Educate health care professionals, women of childbearing age and general public about birth defects. Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Legislators, Federal and state agencies Program status: Currently collecting data Start Year: 1998 Earliest year of available data: 1998 Organizational location: Department of Health (Epidemiology/Environment), University Population covered annually: 211,228 in 2014 Statewide: YesCurrent legislation or rule: Section 381.0031(1,2) F.S., allows for development of a list of reportable conditions. Birth defects were added to the list in July 1999. Legislation year enacted: 1999

Case DefinitionOutcomes covered: Major structural malformations and genetic disorders Pregnancy outcome: Livebirths (20 week gestation and greater) Age: Until age 1 Residence: Florida

Surveillance MethodsCase ascertainment: Passive case-finding with case confirmation, FL has two CDC funded cooperative agreements which use active case ascertainment which is linked to the passive surveillance program. Vital Records: Birth certificates, Death certificates, Matched birth/death fileOther state based registries: Programs for children with special needs Delivery Hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Disease index or discharge index

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease) Coding: ICD-9-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, Dedicated server for birth defects data

Data AnalysisData analysis software: SAS, Access, SQL, dBASE Quality assurance: Validity checks, Re-abstraction of cases, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases, Maternal linked file. System integration: The department has created a maternally linked file beginning with 1998. The birth defects data has been included in this linked file. Birth defects data are displayed on the department's Environmental Public Health Tracking Program site.

FundingFunding source: 75% General state funds, 23% CDC grant, 2% Private FoundationWeb site: www.fbdr.orgSurveillance reports on file: Publications, procedure manauals, electronic case ascertaintment dababase and educational materials

Comments: CDC/NCBDDD Cooperative Agreement for enhanced surveillance of selected birth defects, referral for services and prevention activities.

ContactsHeather R. Lake-Burger, MS/MPH Florida Department of Health 4052 Bald Cypress Way, Bin A24 Tallahassee, FL 32399-1712 Phone: 850-245-4444, ext. 2828 Fax: 850-922-8473 E-mail: [email protected]

Philip Cavicchia, PhD. Florida Department of Health 4052 Bald Cypress Way, Bin A24 Tallahassee, FL 32399-1712 Phone: 850-245-4444 ext. 3873 Fax: 850-922-8473 E-mail: [email protected]




Georgia

Georgia Birth Defects Reporting And Information System (GBDRIS )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 2003 Earliest year of available data: 2007 Organizational location: Department of Health (Epidemiology/Environment, Maternal and Child Health) Population covered annually: 131,333 in 2015 Statewide: YesCurrent legislation or rule: Birth defects are reportable under State Laws Official Code of Georgia Annotated (OCGA) 31-12-2 and 31-1-3.2 which mandate the reporting of notifiable diseases and newborn hearing screening, and Chapters 290-5-3-.02 and 290-5-24 of the Rules of Department of Human Resources, which regulate the reporting of notifiable diseases and metabolic disorders.

Case DefinitionOutcomes covered: NBDPN core and recommended birth defects plus microcephaly. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Up to 18 years of age Residence: In and out of state births to state residents

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificate Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Coding: ICD-9-CM, ICD-10-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Pregnancy/delivery complications, Maternal risk factors Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, Microsoft SQL Server 2012

Data AnalysisData analysis software: SAS, Access, Microsoft SQL Server 2012 Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Public health program evaluation, Monitoring outbreaks and cluster investigations, Service delivery, Grant proposals System integration System integration: We are working to integrate it with our child health data system that contains birth, genetics and intervention referrals.

FundingFunding source: 100% MCH funds

OtherAdditional information on file: In Georgia, please note that other surveillance is performed by Metropolitan Atlanta Congenital Defects Program (MACDP) and that is where the numbers for your report come from.

ContactsMichael Lo, MSPH Epidemiology Section, Georgia Department of Public Health 2 Peachtree St., NW, Suite 11-435 Atlanta, GA 30303 Phone: 404-657-8363 Fax: 404-657-2763 E-mail: [email protected]

Ankit Sutaria, MBBS, MPH Epidemiology Section, Georgia Department of Public Health 2 Peachtree St., NW, Suite 11-455 Atlanta, GA 30303 Phone: 404-657-2440 Fax: 404-657-2763 E-mail: [email protected]




Hawaii

Hawaii Birth Defects Program (HBDP )

Purpose: Surveillance Partner: Hospitals, Iowa Registry for Congenital and Inherited Disorders Program status: Currently collecting data Start Year: 1988 Earliest year of available data: 1986 Organizational location: Department of Health (Children with Special Health Needs Branch) Population covered annually: 19,000 Statewide: YesCurrent legislation or rule: Hawaii Revised Statutes - sec. 321-421 through 426 Hawaii Revised Statutes - sec. 324-41 through 44 Legislation year enacted: 2002

Case DefinitionPregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (Less than 20 weeks gestation, 20 weeks gestation and greater), Elective terminations (All gestational ages) Age: Up to one year after delivery Residence: All in-state births

Surveillance MethodsCase ascertainment: Active Case Finding Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease) Conditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, Ocular conditions, Auditory/hearing conditions, Any infant with a codable def Coding: CDC coding system based on BPA


Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Access

Data AnalysisData analysis software: SAS Quality assurance: Validity checks, Double-checking of assigned codes, Clinical review Data use and analysis: Epidemiologic studies (using only program data)

FundingFunding source: 100% State of Hawaii Birth Defects Special FundWeb site: http://health.hawaii.gov/genetics/programs/hbdhome/

ContactsJonathan B. Kimura, MSCP Hawaii Birth Defects Program, Hawaii State Department of Health 741 Sunset Avenue Honolulu, Hawaii 96816 Phone: 808-733-9065 Fax: 808-733-9068 E-mail: [email protected]

Sylvia Mann, MS, CGC Genomics Section, Hawaii State Department of Health 741 Sunset Avenue Honolulu, Hawaii 96816 Phone: 808-733-9063 Fax: 808-733-9068 E-mail: [email protected]




Idaho

Program status: No surveillance program ContactsPam Harder Idaho Dept of Health & Welfare 450 West State Street Boise, ID 83720 Phone: 208 334-6658 Fax: 208-334-4946 E-mail: [email protected]

Jacquie Watson Childrens Special Health Program, Idaho Department of Health and Welfare 450 West State Street Boise, ID 83720 Phone: 208-334-5963 Fax: 208-334-4946 E-mail: [email protected]




Illinois

Adverse Pregnancy Outcomes Reporting System (APORS )

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Community Nursing Services, Early Childhood Prevention Programs, Drug-testing laboratories; Departments of Human Services, Health and Family Services, Children and Family Services; Newborn Metabolic Screening Program, Program status: Currently collecting data Start Year: 1986 Earliest year of available data: 1989 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 155,000 Statewide: YesCurrent legislation or rule: Illinois Health and Hazardous Substances Registry Act (410 ILCS 525/) 77 Illinois Administrative Code 840

Case DefinitionPregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, or the family chose to hold a funeral) Age: 2 years Residence: In and out of state births to state residents

Surveillance MethodsCase ascertainment: Passive case-finding with case confirmation, Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries, Reporting from all hospital nurseries Pediatric & tertiary care hospitals: Discharge summaries, Reporting from all hospital nurseries

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All prenatal diagnosed or suspected cases, APORS collects and refers cases of neonatal deaths, infants with gestational age less than 31 weeks, infants with prenatal drug exposure (excluding marijuana), serious congenital infections, endocrine, metabolic and immune disorders, hemoglobinopathies, coagulation defects, leukemia, intrauterine growth restriction, seizures, conditions leading to more than 72 hours on a ventilator, and selected other conditions. Only charts with reported selected birth defects are reviewed. Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: CDC coding system based on BPA, ICD-10-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care

Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, Purpose-built system linked with Vital Record System

Data AnalysisData analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file System integration: Cases are collected in a database that is a module of the Vital Record reporting system. Cases may be initiated from the birth certificate, by hospital staff or by APORS staff. Local community health agencies have access to cases in their jurisdiction for provision of case-management services. APORS cases are also included in the Illinois Healthcare and Family Services Enterprise Data Warehouse where they are available to Illinois' Department of Human Services, Department of Children and Family Services, and Department of Healthcare and Family Services staffs.

FundingFunding source: 52% General state funds, 42% CDC grant, 6% Other federal funding (non-CDC grants)Web site: http://www.dph.illinois.gov/data-statistics/epidemiology/aporsSurveillance reports on file: Birth Defects and Other Adverse Pregnancy Outcomes in Illinois 2005-2009 Trends in the Prevalence of Birth Defects in Illinois and Chicago 1989-2009 Additional information on file: QC reports, fact sheets

ContactsJane Fornoff, MA, MSC, DPhil Illinois Department of Public Health 535 W Jefferson St, Fl 3 Springfield, IL 62761 Phone: 217-785-7133 Fax: 217-524-1770 E-mail: [email protected]

Teifu Shen, MD, PhD Illinois Department of Public Health 535 W Jefferson St, Fl 3 Springfield, IL 62761 Phone: 217-785-1873 Fax: 217-524-1770 E-mail: [email protected]




Indiana

Indiana Birth Defects & Problems Registry (IBDPR )

Purpose: Surveillance, Research, Referral to Services Partner: Hospitals, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 2002 Organizational location: Department of Health (Epidemiology/Environment, Maternal and Child Health, State Health Data Center) Population covered annually: 85,000 Statewide: YesCurrent legislation or rule: IC 16-38-4-7 Rule 410 IAC 21-3 Legislation year enacted: 2001

Case DefinitionOutcomes covered: ICD-9-CM Codes 740-759.9, Fetal Alcohol Spectrum Disorder (760.71), Pervasive Developmental Disorders (299.0-299.99), fetal deaths, metabolic disorders & hearing loss from newborn screening, selected neoplasms, congenital blood disorders, and certain eye disorders. Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Up to 5 years (FAS); all individuals with Autism Spectrum Disorders; up to 3 years for all other birth defects Residence: In- and out-of-state (as reported to IBDPR) births to state residents

Surveillance MethodsCase ascertainment: Passive case-finding with case confirmation, Passive case-finding without case confirmation, case confirmation for hospital discharge data; w/o case confirmation for physician reporting Vital Records: Birth certificates, Death certificates, Matched birth/death fileOther state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Chart audits of 49 targeted birth defects Pediatric & tertiary care hospitals: Disease index or discharge index, Chart audits of 49 targeted birth defects Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759 Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: ICD-9-CM, and BPA


Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), ISDH Chart Auditors submit hospital chart audit information electronically through use of a laptop and a web-based portal to the Indiana State Department of Health Repository, which stores and integrates the data.Database collection and storage: Oracle

Data AnalysisData analysis software: SAS, Oracle and ArcView GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Needs assessment

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file System integration: The database is linked with birth, death, newborn hearing screening, and newborn metabolic and pulse oximetry screening data.

FundingFunding source: 30% MCH funds, 5% Genetic screening revenues, 65% IBDPR fund obtained through birth certificate search

OtherWeb site: www.birthdefects.in.govSurveillance reports on file: "Progress on the Implementation of IC 16-38-4-7 (Birth Problems Registry) as amended in First Regular Session 112th General Assembly (2001) Reporting Period: July 2014-June 2015" http://www.in.gov/isdh/files/IBDPR_Annual_Report_for_14_15_reporting_period_final_10_30_15.pdf

ContactsHolly Miller, MPH Indiana State Department of Health 2 North Meridian Street, 2E Indianapolis, IN 46204 E-mail: [email protected]

Martha Allen, MSN, RN, NE-BC Indiana State Department of Health 2 North Meridian Street, 2E Indianapolis, IN 46204 Phone: 317-233-1252 Fax: 317-234-2995 E-mail: [email protected]



Birth Defects Research (Part A) 106: S1-S177 (2016)Birth Defects Research (Part A) 106: S1-S177 (2016)

IowaIowa Registry for Congenital and Inherited Disorders (IRCID )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Prevention education programs Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Legislators Program status: Currently collecting data Start Year: 1983 Earliest year of available data: 1983 Organizational location: UniversityPopulation covered annually: 38,813 average live births per year (2009-2013) Statewide: YesCurrent legislation or rule: Iowa Code 136A, Iowa Administrative Code 641-4.7

Case DefinitionOutcomes covered: Major birth defects, muscular dystrophy, fetal deaths with and without birth defects, newborn screening disorders Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: 2 years Residence: Maternal residence in Iowa at time of delivery

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates, Fetal death certificates, Fetal Death Evaluation Protocol Other state based registries: Programs for children with special needs, Developmental Disabilities Surveillance, Cancer registry, Iowa Perinatal Care Program Delivery Hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Cardiac catheterization laboratories, Specialty outpatient clinics, Collect verbatim summaries of surgical reports, diagnostic test results, consultation reports, and autopsy/surgical pathology reports. Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Cardiac catheterization laboratories, Specialty outpatient clinics, Collect verbatim summaries of surgical reports, diagnostic test results, consultation reports, and autopsy/surgical pathology reports. Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities, Maternal serum screening facilities Other sources: Physician reports, Outpatient surgery facilities; IHA Discharge Data

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with a CDC/BPA code, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All elective abortions, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Developmental delay, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Auditory/hearing conditions, Any infant with a codable defect

Coding: CDC coding system based on BPA, ICD-9-CM


Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Access, Oracle, PC Server

Data AnalysisData analysis software: SAS, Access, Oracle Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects



OtherWeb site: http://www.public-health.uiowa.edu/ircid/

ContactsPaul A. Romitti, Ph.D. Iowa Registry for Congenital and Inherited Disorders UI Research Park 201 IREH Iowa City, IA 52242-5000 Phone: 319-384-1549 Fax: 319-353-4095 E-mail: [email protected]




Kansas

Kansas Birth Defects Information System (BDIS )

Purpose: Surveillance Partner: Hospitals, Environmental Agencies/Organizations, Universities Program status: Interested in developing a surveillance program Start Year: 1985 Earliest year of available data: 1985 Organizational location: Department of Health (Epidemiology/Environment, Maternal and Child Health, Vital Statistics) Population covered annually: 39,193 Statewide: YesCurrent legislation or rule: K.S.A. 65-1,241 through 65-1,246 Legislation year enacted: 2004

Case DefinitionOutcomes covered: The outcome data below are available from Office of Vital Statistics. Live births and stillbirths (fetal deaths) information are used as part of the Birth Defects Information System (BDIS). Thirteen anomalies (and "other" congenital anomalies) are listed on the birth certificate and are reported, however, these are not linked to ICD-9 codes. In addition to major birth defects, low birth weight (<=1,200 grams), low Apgar scores (<=5 at five minutes), seizure or serious neurologic dysfunction, and significant birth injury [skeletal fracture(s), peripheral nerve injury, and/or soft tissue/solid organ hemorrhage which requires intervention] are also reported to BDIS. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Under five years of age with a primary diagnosis of a congenital anomaly or abnormal condition Residence: In state and out of state births to Kansas residents and in-state births to out of state residents

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Stillbirth (fetal death) certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Reports Pediatric & tertiary care hospitals: Reports Other sources: Physician reports Case AscertainmentCoding: ICD-9-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), In Kansas, birth defects (congenital anomalies) are collected through three data sources: live birth certificates, stillbirth (fetal death) certificates, and the congenital malformations and fetal alcohol syndrome reporting form. The live birth and stillbirth (fetal death) certificates data (congenital anomalies and abnormal conditions) contained within the Vital Statistics Integrated Information System are extracted, downloaded and transferred to BDIS. Any additional reports of congenital anomalies from physicians, hospitals and freestanding birthing centers are entered manually into BDIS.Database collection and storage: Access, SQL Server

Data AnalysisData analysis software: SAS Quality assurance: Office of Vital Statistics conducts verification on live birth and stillbirth (fetal death) certificate data. Data use and analysis: Baseline rates, Rates by demographic and other variables, Time trends, Grant proposals, Ad-hoc upon request (e.g. cluster investigations)

System integrationSystem links: Link to other state registries/databases System integration: Our program has a link with vital statistics records. BDIS uses the same data system (WebBFH) and shares information with Children and Youth with Special Health Care Needs and Newborn metabolic screening program.


OtherWeb site: http://www.kdheks.gov/bfh/birth_defects.htm

ContactsJamie S. Kim, MPH Kansas Department of Health and Environment 1000 SW Jackson, Suite 220 Topeka, Kansas 66612-1274 Phone: 785-296-6467 Fax: 785-296-6553 E-mail: [email protected]

Jamey D. Kendall, BSN Kansas Department of Health and Environment 1000 SW Jackson, Suite 220 Topeka, Kansas 66612-1274 Phone: 785-291-3363 Fax: 785-296-6553 E-mail: [email protected]




Kentucky

Kentucky Birth Surveillance Registry (KBSR )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Genetic Clinics, Laboratories, Program status: Currently collecting data Start Year: 1998 Earliest year of available data: 1998 Organizational location: Department of Health (Maternal and Child Health)Population covered annually: 56,000 Statewide: YesCurrent legislation or rule: Kentucky Revised Statute 211.660 Kentucky birth surveillance registry - Department's authority to promulgate administrative regulations. Effective: July 15, 2002 Legislation year enacted: 2002

Case DefinitionOutcomes covered: KBSR collects information concerning birth defects, stillbirths, and high-risk conditions for Kentucky residents birth to age five. Diagnoses include the following ICD-9 codes: • All congenital anomalies codes - 740-759 • Dwarfism not elsewhere classified - 259.4. • Metabolic/storage disorders - 270-279, Excluding codes 274, 276 and 278. • Hereditary hemolytic anemia - 282. • Neurologic disorders of brain and spinal cord - 334-335. • Cerebral palsy - 343. • Teratogens (noxious influences) - 760.7 and all subcategories, from 760.70 to 760.79. • Infant of diabetic mother - 775.0. • Failure to thrive - 783.4. • Small for gestational age - 764.0 • Neonatal Abstinence Syndrome – 760.79 • Fetal Alcohol Syndrome – 760.71 Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (A fetal death of twenty (20) completed weeks' gestation or more, calculated from the date last normal menstrual period began to the date of deliv Age: Up to 5 years of age Residence: In and out of state births to state residents

Surveillance MethodsCase ascertainment: Passive case-finding with case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Newborn CCHD Screening Delivery Hospitals: Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery logs, Laboratory logs, Specialty outpatient clinics Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: ICD-9-CM, ICD-10-CM


Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Online database developed in-house

Data AnalysisData analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file System integration: Birth records from vitals statistics are linked with all cases in the KBSR database. Data from the state Newborn CCHD Screening database and the state Neonatal Abstinence Syndrome surveillance system are incorporated into KBSR.

Funding

Funding source: 100% CDC grantWeb site: http://chfs.ky.gov/dph/mch/ecd/kbsr.htmSurveillance reports on file: Birth Defect Specific Fact Sheets; Contact of Partners

ContactsMonica L Clouse, MPH Kentucky Department for Public Health 275 E Main St Frankfort, KY 40601 Phone: 502-564-4830 E-mail: [email protected]

Emily Ferrell, MPH Kentucky Department for Public Health 275 E. Main St Frankfort, KY 40601 Phone: 502-564-3756 E-mail: [email protected]




Louisiana

Louisiana Birth Defects Monitoring Network (LBDMN )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 2005 Earliest year of available data: 2005 Organizational location: Department of Health (LDH/OPH/CCPH/BFH/Title V CYSHCN Programs) Population covered annually: 62,000 Statewide: YesCurrent legislation or rule: Law: LA R.S. 40:31.41 - 40:31.48, 2001. DHH Rule: LAC 48:V. Chapters 161 and 163 Legislation year enacted: 2001

Case DefinitionOutcomes covered: Major structural birth defects and selected genetic conditionsPregnancy outcome: Livebirths (greater than or equal to 20 weeks gestation or greater than or equal to 350 grams) Age: Up to third date of birth Residence: In and out of state births to state residents

Surveillance MethodsCase ascertainment: Active Case Finding, Combination of active and passive case ascertainment, population based Vital Records: Birth certificates, Death certificates, Matched birth/death fileDelivery Hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Specialty outpatient clinicsOther sources: Louisiana Hospital Inpatient Discharge Data (LAHIDD)

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any chart with selected ICD-10 Q codes, N13.1-N13.4; E78.71-E78.72.

Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM, ICD-10


Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Custom built web-based database.

Data AnalysisData analysis software: SAS, ArcGIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link case finding data to final birth file, Link case finding data to final death file System integration: Integrated with Louisiana Electronic Event Registration System (LEERS) birth and death records.

FundingFunding source: MCH Title V Block Grant State Matching Funds

OtherWeb site: www.dhh.la.gov/lbdmnSurveillance reports on file: Louisiana Morbidity Report, May-June 2009, Vol 20, No 3; Results from 2006-2008 Birth Defects Surveillance System; 2013 Annual NBDPN Data Report; Presentations of analysis using 2006-2008 data concerning ASD Reporting; Cleft Lip/Palate and Hearing Loss; and Age and Racial Disparities. Additional information on file: Advisory Board Documentation http://wwwprd.doa.louisiana.gov/boardsandcommissions/viewBoard.cfm?board=192

ContactsDionka C Pierce, MPH LDH/OPH/CCPH/BFH/CSHS/LBDMN Room 2060 1450 Poydras St., Ste 1950 New Orleans, LA 70112 Phone: 504-568-5629 Fax: 504-568-7529 E-mail: [email protected]

Julie A Johnston, BS LDH/OPH/CCPH/BFH/LBDMN PO BOX 60630 New Orleans, LA 70160-0630 Phone: 225-342-2017 Fax: 504-568-7529 E-mail: [email protected]




Maine

Maine CDC Birth Defects Program (MBDP )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Education Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, March of Dimes, New England Birth Defects Consortium, Maine Tracking Network Program status: Currently collecting data Start Year: 1999 Earliest year of available data: 2003 Organizational location: Department of Health (Division of Population Health/MCH Unit/CSHN) Population covered annually: 12,593 Statewide: YesCurrent legislation or rule: 22 MRSA c. 1687 Legislation year enacted: 1999

Case DefinitionOutcomes covered: Selected major birth defects: NTD, clefts, gastroschisis, omphalocele, trisomy 21, reduction deformities of upper and lower limb, hypospadias and major heart defects Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (Less than 20 weeks gestation, 20 weeks gestation and greater, Prenatally diagnosed at any gestation), Elective terminations (Prenatally diagnosed Age: Through age one Residence: All in-state births to Maine residents

Surveillance MethodsCase ascertainment: Passive case ascertainment with active case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities, Maternal serum screening facilities Other sources: Midwifery Facilities, Physician reports, Children with Special Health Needs

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases, ICD-10 codes Conditions warranting chart review beyond the newborn period: Cardiovascular condition, Any infant with a codable defect Coding: ICD-9-CM, ICD-10 codes

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Electronic scanning of printed recordsDatabase collection and storage: Oracle, Microsoft SQL Server

Data AnalysisData analysis software: SAS, Stat-exact Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file System integration: Newborn Hearing/ Newborn Bloodspot Screening Programs


OtherWeb site: http://www.maine.gov/dhhs/boh/cshn/birth_defects/index.html

ContactsPatricia Williams Department of Health & Human Services 11 State House Station, 286 Water St.-7th floor Augusta, ME 4333 Phone: 207-287-4802 Fax: 207-287-5355 E-mail: [email protected]

Diane C Haberman, MSW, LCSW Department of Health & Human Services 11 State House Station, 286 Water St. 7th floor Augusta, ME 4333 Phone: 207-287-8424 Fax: 207-287-5355 E-mail: [email protected]




Maryland

Maryland Birth Defects Reporting and Information System (BDRIS )

Purpose: Surveillance, Referral to Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 1983 Earliest year of available data: 1984 Organizational location: Department of Health (Epidemiology/Environment, Prevention and Health Promotion Administration) Population covered annually: 75,000 Statewide: YesCurrent legislation or rule: Health-General Article, Section 18-206; Annotated Code of Maryland Legislation year enacted: 1982

Case DefinitionOutcomes covered: Selected birth defects - anencephaly, spina bifida, hydrocephaly, cleft lip, cleft palate, esophageal atresia/stenosis, rectal/anal atresia, hypospadias, reduction deformity - upper or lower limb, congenital hip dislocation, and Down syndrome until 2009, then all significant birth defects Pregnancy outcome: Livebirths (All gestational ages and birth weights, ), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, Or >=500 grams weight; reports accepted on fetal deaths <500 grams or <20 weeks gestation if sent to us.), Ele Age: Newborn Residence: All in-state births

Surveillance MethodsCase ascertainment: Passive case-finding with case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Sickle Cell Disease, Critical Congenital Heart Defect follow Up Program Delivery Hospitals: Primary source: sentinel birth defects hospital report form; electronic reporting began 5/1/13 Pediatric & tertiary care hospitals: transfers from delivery hospitals, if screening not done at delivery hospital. Other sources: Midwifery Facilities

Case AscertainmentConditions warranting chart review in the newborn period: All fetal death certificates Coding: ICD-9-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Access, Mainframe, Visual dBASE, SAS, ASCII files; as of 5/1/13 data stored on vendor server

Data AnalysisData analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Identification of potential cases for other epidemiologic studies, Service delivery, Referral, Grant proposals, Education/public awareness

System integration System integration: As of 5/1/13, the birth defects data collection is integrated into the same electronic system in which we collect hearing and CCHD screening data.


OtherWeb site: http://phpa.dhmh.maryland.gov/genetics/SitePages/bdris.aspxSurveillance reports on file: All reports submitted to CDC

ContactsMonika Piccardi, RN, BSN Maryland Dept. of Health & Mental Hygiene 201 W. Preston Street, Room 423 Baltimore, MD 21201 Phone: 410-767-6737 Fax: 443-333-7956 E-mail: [email protected]

Donna X. Harris Maryland Dept. of Health & Mental Hygiene 201 W. Preston Street, Room 423 Baltimore, MD 21201 Phone: 410-767-5642 Fax: 443-333-7956 E-mail: [email protected]




Massachusetts

Massachusetts Birth Defects Monitoring Program (MBDMP )

Purpose: Surveillance, Research, Public health program evaluation, assist community health assessments Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Maternal and Child Health Programs, State Lab Program status: Currently collecting data Start Year: 1997 Earliest year of available data: 1999 Organizational location: Department of Public Health (Bureau of Family Health and Nutrition) Population covered annually: 73,000 Statewide: YesCurrent legislation or rule: Massachusetts General Laws, Chapter 111, Section 67E in 1963. In 2002 the Massachusetts legislature amended this statute, expanding the birth defects monitoring program. In 2009 regulations for a Congenital Anomalies Registry, 105 CMR 302.000, were promulgated.

Case DefinitionPregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (>= 20 weeks gestation or >= 350 grams), Unspecified non-live births (Includes elective terminations at all gestational ages and spontaneous losses <20 weeks and <350 grams). Age: 1 year Residence: In- and out-of-state births to state residents

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificate Delivery Hospitals: Disease index or discharge index, Regular nursery logs, ICU/NICU logs or charts, Postmortem/pathology logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Postmortem/pathology logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, All prenatal diagnosed or suspected cases, Any birth certificate with a major birth defect box checked Conditions warranting chart review beyond the newborn period: Allinfant deaths (excluding prematurity), Any infant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM


Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Access

Data AnalysisData analysis software: SAS, Access, Excel Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Identification of potential cases for other epidemiologic studies, Grant proposals, Education/public awareness, Epidemiologic studies (using program data)

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file, Link case finding data to open and closed birth file, as well as open and closed fetal file. System integration: Link birth defects data to Pregnancy to Early Life Longitudinal (PELL) data system.

FundingFunding source: 40% General state funds, 60% MCH fundsWeb site: www.mass.gov/dph/birthdefectsSurveillance reports on file: Annual or bi-annual reports, 1999 through 2012

ContactsMahsa M. Yazdy, PhD, MPH Massachusetts Department of Public Health, Bureau of Family Health and Nutrition 250 Washington Street, 5th floor Boston, MA 2108 Phone: 617-624-6045 Fax: 617-624-5574 E-mail: [email protected]

Cathleen A. Higgins, BA Massachusetts Department of Public Health, Bureau of Family Health and Nutrition 250 Washington Street, 5th floor Boston, MA 2108 Phone: 617-624-5510 Fax: 617-624-5574 E-mail: [email protected]




Michigan

Michigan Birth Defects Registry (MBDR )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Prevalence and mortality statistics Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Early Childhood Prevention Programs, Legislators, Outpatient Pediatrics clinics for HL7 reporting pilot Program status: Currently collecting data Start Year: 1992 Earliest year of available data: 1992 Organizational location: Department of Health (Vital Statistics) Population covered annually: 112,000 Statewide: YesCurrent legislation or rule: Public Act 236 of 1988 Legislation year enacted: 1988

Case DefinitionOutcomes covered: Congenital anomalies, certain infectious diseases, conditions caused by maternal exposures and other diseases of major organ systems Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks or >400 grams) Age: Up to two years after delivery except that reporting to age 12 for FASD beginning in 2013 Residence: Michigan births regardless of residence, out of state births diagnosed or treated in Michigan regardless of residence

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate, Fetal deaths since 2004 only Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Cancer registry Delivery Hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Specialty outpatient clinicsThird party payers: Medicaid databases Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetic facilities Other sources: Physician reports, Pediatric Dentistry

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Conditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, All infant deaths (excluding prematurity), Childhood death Coding: ICD-9-CM, ICD-10-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth

measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: FoxPro

Data AnalysisData analysis software: SPSS, SAS, Access, Fox-pro, Excel Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file, CSHCS, WIC System integration: No, data from vital records and other sources are extracted and loaded into registry as opposed to truly integrated database structures.

FundingFunding source: 10% CDC grant

OtherWeb site: http://www.michigan.gov/mdch/0,1607,7-132-2944_4670---,00.htmlAdditional information on file: Http://www.michigan.gov/mdch/0,1607,7-132-2945_5221-16665--,00.html

ContactsGlenn Edward Copeland, MBA Michigan Birth Defects Registry 333 S. Grand Ave. Lansing, MI 48933 Phone: 517-335-8677 Fax: 517-335-8711 E-mail: [email protected]

Lorrie Kay Simmons, RHIT Michigan Department of Community Health 333 S. Grand Ave. Lansing, MI 48933 Phone: 517-335-9197 Fax: 517-335-8711 E-mail: [email protected]




Minnesota

Minnesota Birth Defects Information System (BDIS )

Purpose: Surveillance, Research, Referral to Services, Targeted prevention to higher risk populations. Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 2005 Earliest year of available data: 2006 Organizational location: Department of Health (Maternal and Child Health)Population covered annually: 70,000 Statewide: No, Currently covering about 95% of live births in MN. Statewide surveillance is expected to be completed by the end of 2016. Coverage is complete for smaller regions of the state. Prevalence estimates from 2006-2010 are available for the two largest counties in Minnesota, Hennepin and Ramsey counties, which account for just over 40% of MN births. For 2011 births, coverage expanded to complete in the 7-county metro area. Current legislation or rule: MS 144.2215-2219 Legislation year enacted: 2004

Case DefinitionOutcomes covered: Major structural and genetic defects diagnosed up to 1 year of age identified by CDC and NBDPN. Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Up to 1 year after delivery Residence: In-state and out of state births to state residents

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates, Matched birth/death fileOther state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Third party payers: In 2017, Medicaid databases will become available. Other sources: Statewide de-identified hospital discharge dataset

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any birth certificate with a birth defect box checked, All deaths prior to age 2 with a birth defect indicated as cause of death on death certificates, starting with 2009 births Coding: CDC coding system based on BPA

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Family history

Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Remote access to medical records in two health systems and five facilities as of May 20016Database collection and storage: Web-based department-wide integrated disease surveillance database. Maven platform by Consilience Software.

Data AnalysisData analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Identification of potential cases for other epidemiologic studies, Needs assessment, Referral, Education/public awareness, Prevention projects, Collaboration with Environmental Public Health Tracking Program

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file, Sharing of confirmed cases with key contacts at local public health agencies for service referral. LPH staff can log on to our the birth defects database to view relevan System integration: The Birth Defects Information System (BDIS) is integrated with Newborn Hearing program and Heritable Conditions. The databases share a model on the same platform, but they are managed separately. (This platform, Maven by Consilience Software, is also used by many infectious disease surveillance systems in MN and access is limited by disease/user role.) Additional integration with the Newborn Screening program will take place in 2014 as universal newborn CCHD screening is implemented.

FundingFunding source: 90% General state funds, 10% CDC grant

OtherWeb site: http://www.health.state.mn.us/divs/cfh/program/cyshn/bdmaintro.cfm

ContactsSook Ja Cho, PhD, MPH, BSN Minnesota Department of Health 85 East 7th Place, PO Box 64882 St. Paul, MN 55164 Phone: 651-201-4931 Fax: 651-201-3590 E-mail: [email protected]

Barbara Frohnert, MPH Minnesota Department of Health 85 East 7th Place, PO Box 64882 St. Paul, MN 55164 Phone: 651-201-5953 Fax: 651-201-3590 E-mail: [email protected]




Mississippi

Mississippi Birth Defects Surveillance Registry

Purpose: Surveillance Partner: Local Health Departments, Hospitals, Advocacy Groups, Title V Children with Special Healthcare Needs Program status: Currently collecting data Start Year: 2000 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health, Genetic Services Bureau) Population covered annually: 38,000 Statewide: YesCurrent legislation or rule: Section 41-21-205 of the Mississippi Code of 1972Legislation year enacted: 1997

Case DefinitionOutcomes covered: The infant/fetus must have a reportable structural defect, newborn screening disorder, functional or metabolic disorder, genetically determined or a defect resulting from an environmental influence during embryonic or fetal life. Pregnancy outcome: Livebirths, Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Birth to 21 years Residence: In and out of state births to state residents

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation, Active case-finding for Zika related birth defects Vital Records: Matched birth/death file Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Zika related birth defects Coding: ICD 10

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, New web based program (in development)

Data AnalysisData analysis software: SPSS, SAS, Access Quality assurance: Validity checks, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Grant proposals, Education/public awareness

System integrationSystem links: Link case finding data to final birth file, Newborn Screening Program Newborn screening program database and Early Hearing program database

FundingFunding source: 100% Genetic screening revenues

OtherWeb site: www.HealthyMS.com

ContactsAlyce L. Stewart, DrPH, MPH, MCHES Mississippi State Department of Health 570 East Woodrow Wilson Ave Jackson, Mississippi 39215-1700 Phone: 601 576-7619 Fax: 601 576-7498 E-mail: [email protected]

Ninglong Han, MS Mississippi State Department of Health 570 East Woodrow Wilson Ave Jackson, Mississippi 39215-1700 Phone: 601 576-8165 Fax: 601 576-8168 E-mail: [email protected]




Missouri

Missouri Birth Defects Surveillance System

Purpose: Surveillance, Research Partner: Environmental Agencies/Organizations, Legislators, Missouri Critical Congenital Heart Defect testing program Program status: Currently collecting data Start Year: 1985 Earliest year of available data: 1980 Organizational location: Department of Health (Vital Statistics) Population covered annually: '76000 Statewide: Yes

Case DefinitionOutcomes covered: ICD-9 codes 740-759, plus genetic, metabolic, and other disorders Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, Fetal death certificates are only source of data) Age: Up to one year after delivery Residence: In- and out-of-state births to state residents

Surveillance MethodsCase ascertainment: Population-based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Delivery Hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics

Case AscertainmentConditions warranting chart review in the newborn period: Missouri does not have resources to conduct confirmatory chart review for cases. Coding: ICD-9-CM, ICD-10-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: SAS

Data AnalysisData analysis software: SAS Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Education/public awareness

System integrationSystem links: Link case finding data to final birth file

FundingFunding source: 100% MCH fundsWeb site: http://health.mo.gov/data/birthdefectsregistry/index.phpSurveillance reports on file: MO Birth Defects Report 1996-2000

ContactsLoise Wambuguh, PhD MO Dept of Health, Bureau of Vital Statistics PO Box 570, 920 Wildwood Drive Jefferson City, MO 65102 Phone: 573-751-6343 Fax: 573-526-4102 E-mail: [email protected]

Qian Liu, PhD Missouri Dept of Health, Bureau of Vital Statistics PO Box 570, 920 Wildwood Drive Jefferson City, MO 65102 Phone: 573-526-3801 Fax: 573-526-4102 E-mail: [email protected]




Montana

Montana Birth Outcomes Monitoring System (MBOMS )

Program status: No surveillance program Start Year: 1999 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health)Population covered annually: 12,000 Current legislation or rule: None

Case DefinitionOutcomes covered: Major structural birth defects, chromosomal anomalies specified in the CDC 45 reportables for births occurring in calendar years 200 through 2004. Registry suspended beginning with calendar year 2005 births due to loss of CDC funding. Pregnancy outcome: Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages)

Comments: MBOMS became inactive in 2005

ContactsDenise Higgins, BS Montana Dept. of Public Health and Human Services PO Box 202951 Helena, MT 59620 Phone: 406-444-4743 Fax: 406-444-2790 E-mail: [email protected]




Nebraska

Nebraska Birth Defect Registry

Purpose: Surveillance, Research Partner: Hospitals, Universities, Early Childhood Prevention Programs, Vital Statistics, Maternal Child Health Program status: Currently collecting data Start Year: 1972 Earliest year of available data: 1973 Organizational location: Department of Health (Vital Statistics, Office of Epidemiology and Informatics) Population covered annually: 27,000 Statewide: YesCurrent legislation or rule: Laws 1972, LB 1203, §1, §2, §3, §4 (alternate citation: Public Health & Welfare [Codes] §71-645, §71-646, §71-647, §71-648, §71-649) Legislation year enacted: 1972

Case DefinitionPregnancy outcome: Livebirths (=> 20 weeks, => 500 grams), Fetal deaths - stillbirths, spontaneous abortions, etc. (=> 20 weeks, => 500 grams) Age: Up to one year after delivery Residence: In state birth to state resident, out of state births to state residents when Out State Jurisdiction allows use of data

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Fetal death certificate Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Specialty outpatient clinicsOther specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Midwifery Facilities, Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any birth certificate with a birth defect box checked Coding: CDC coding system based on BPA

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: SQL

Data AnalysisData analysis software: SAS, Reports from Netsmart Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Grant proposals

System integrationSystem links: Link to other state registries/databases System integration: Births, Deaths, Fetal deaths


OtherWeb site: http://dhhs.ne.gov/publichealth/Pages/vitalrecords_partners.aspxSurveillance reports on file: Http://dhhs.ne.gov/publichealth/Pages/ced_vs.aspx

ContactsMichelle Hood NE Department of Health & Human Services 301 Centennial Mall South Lincoln, NE 68509 Phone: 402-471-0147 Fax: 402-742-1139 E-mail: [email protected]

Nila Irwin NE Department of Health & Human Services 1033 O St Suite 130 Lincoln, NE 68509 Phone: 402-471-0354 Fax: 402-742-2388 E-mail: [email protected]




Nevada

Nevada Birth Outcomes Monitoring System (NBOMS )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Hospitals, Early Childhood Prevention Programs, Legislators, Bureau of Child, Family, & Community Wellness Program status: Currently collecting data Start Year: 2000 Earliest year of available data: 2005 Organizational location: Department of Health (Maternal and Child Health), State Health Division, Office of Health Statistics and Surveillance, Bureau of Health Statistics, Planning, Epidemiology and ResponsePopulation covered annually: 35,000 Statewide: YesCurrent legislation or rule: NRS 442.300 - 442.330 - Birth Defects Registry Legislation *** Regulation = NAC 442 Legislation year enacted: 1999

Case DefinitionOutcomes covered: Major birth defects and genetic diseases Pregnancy outcome: Livebirths (20 weeks of gestation and greater with all birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (20 weeks gestation and greater) Age: Birth to 7 years of age Residence: In-state births

Surveillance MethodsCase ascertainment: 2011-2013 data combination of active & passive, Population-based, Hospital-based. 2014 and subsequent data passive data collection (hospital discharge data). Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate, hospital medical records, diagnostic/laboratory reports Other state based registries: Newborn hearing screening program, Newborn metabolic screening program, Cancer registry, AIDS/HIV registry Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries Other specialty facilities: Genetic counseling/clinic genetic facilities Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any birth certificate with a birth defect box checkedConditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, Failure to thrive, Developmental delay, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, Any infant with a codable defect Coding: ICD-9-CM


Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Family history

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staffDatabase collection and storage: Access

Data AnalysisData analysis software: SAS, Access Quality assurance: Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, Birth registry data is manually linked to birth defect data, but the actual databases are not linked. System integration: No

FundingFunding source: 100% MCH Block Grant, (Office of Public Health Informatics and Epidemiology (OPHIE) provides the statistician for data workup

OtherSurveillance reports on file: Http://dpbh.nv.gov/Programs/NBOMS/dta/Publications/Nevada_Birth_Outcomes_Monitoring_System_%28NBOMS%29_-_Publications/

ContactsIngrid Mburia, MPH NV Birth Outcomes Monitoring System, Office of Public Health Informatics and Epidemiology (OPHIE), Division of Public and Behavioral Health, Dept. of Health and Human Services 4126 Technology Way, Suite 200 Las Vegas, NV 89706 Phone: 775-461-6600 E-mail: [email protected]

Brad Towle, MA, MPA Office of Health Statistics and Surveillance (OHSS) 4126 Technology Way, Suite 200 Carson City, NV 89706 Phone: 775-684-4243 E-mail: [email protected]




New Hampshire

New Hampshire Zika Birth Conditions Program

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Services Program status: Program has not started collecting data Organizational location: Department of Health (Maternal and Child Health), University Population covered annually: 12,500 Statewide: YesCurrent legislation or rule: RSA 141:J, NH Administrative Rules He-P 3012Legislation year enacted: 2008

Case DefinitionOutcomes covered: Will be determined prior to program's initiation.

Surveillance MethodsCase ascertainment: Will be determined prior to program's initiation.

FundingFunding source: 100% CDC grant

ContactsPaulette Valliere Maternal and Child Health Section, Division of Public Health Services, New Hampshire Department of Health and Human Services 29 Hazen Drive Concord, NH 3301 Phone: 603-271-4587 E-mail: [email protected]

Rhonda Siegel Maternal and Child Health Section, Division of Public Health Services, New Hampshire Department of Health and Human Services 29 Hazen Drive Concord, NH 3301 Phone: 603-271-4516 E-mail: [email protected]




New Jersey

Special Child Health Services Registry (SCHS Registry )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Legislators, Neurodevelopmental Centers; Federally Qualified Health Care Centers; State Parent Advocacy Network Program status: Currently collecting data Start Year: 1928 Earliest year of available data: 1985 Organizational location: Department of Health (Special Child Health and Early Intervention Services) Population covered annually: 105,000 Statewide: YesCurrent legislation or rule: NJSA 26:8-40.2 et seq., NJAC 8:20 - Ammended: 1990, 1991, 1992, 2005, Readopted: 2010, Rule Amendments Adopted: 2009; Readopted: 2010 Legislation year enacted: 1983

Case DefinitionOutcomes covered: All birth defects (structural, genetic, and biochemical), all Autism Spectrum Disorders, and severe hyperbillirubinemia, are required to be reported; all special needs and any condition which places a child at risk (prematurity, asthma, developmental delay) are also reported, but not required. Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Mandated reporting of birth defects diagnosed through age 5, voluntary reporting of birth defects diagnosed > age 6 and all children diagnosed with Special Needs conditions who are 22 years or younger . Autism mandated up to 22 years. Residence: All NJ residents, in and out of state

Surveillance MethodsCase ascertainment: combination of active & passive, Population-based, with annual audits Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Autism Registry Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Specialty outpatient clinics, Quality assurance visit consisting of chart review of 3 month period Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Laboratory logs, Specialty outpatient clinics, quality assurance visit consisting of chart review of 3 month period Third party payers: Universal billing database is used for quality assurance activities Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetic facilities Other sources: Midwifery Facilities, Physician reports, Special Child Health Services county-based Case Management Units, parents, medical examiners, Autism diagnosticians and treatment centers

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, All neonatal deaths, All death certificates for < 3 years of age Conditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent

infections), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Auditory/hearing conditions, Any infant with a codable defect Coding: ICD-9-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Mainframe, SAS; SQL

Data AnalysisData analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness, Merge registry with birth certificate registry and the death certificate registry Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file, link to hearing screening registry System integration: Autism Registry is fully integrated. Newborns having failed Pulse Oximetry Screening are integrated with Registry. Newborn hearing screening registry provides direct report to the SCHS Registry. Metabolic screening program provides direct report to SCHS Registry. Autism Registry is included in the Registry. Special Child Health Services county-based Case Management Referral System is included in the Registry.

FundingFunding source: 90% MCH funds, 10% CDC grant

OtherWeb site: http://www.nj.gov/health/fhs/sch/index.shtml

ContactsJoy Rende, MSA, RNC, NE-BC, CPHM New Jersey Dept of Health PO Box 364 Trenton, NJ 8625 Phone: 609-292-5676 Fax: 609-292-8235 E-mail: [email protected]

Mary M. Knapp, MSN, RN New Jersey Department of Health PO Box 364 Trenton, NJ 8625 Phone: 609-292-5676 Fax: 609-292-8235 E-mail: [email protected]




New Mexico

New Mexico Birth Defects Prevention and Surveillance System (NM BDPASS )

Purpose: Surveillance, Referral to Prevention/Intervention Services Partner: Hospitals Program status: Currently collecting data Start Year: 1995 Earliest year of available data: 1995 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 28,000 Statewide: YesCurrent legislation or rule: In January 2000, birth defects became a reportable condition. These conditions must be reported to the New Mexico Department of Health's Epidemiology and Response Division. Specifically, the conditions must be reported to the Environmental Health Epidemiology Bureau. Legislation year enacted: 2000

Case DefinitionOutcomes covered: 740.0-760.01, with emphasis on 12 birth defects that are nationally consistent data and measures for the Environmental Public Health Tracking Program. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc., Elective terminations (All gestational ages) Age: Birth through age 4 Residence: Births to New Mexico residents occurring in New Mexico.

Surveillance MethodsCase ascertainment: Passive case-finding with case confirmation for selected defects Vital Records: Birth certificates, Death certificates, Fetal birth certificate Delivery Hospitals: Birthing hospital reports Pediatric & tertiary care hospitals: specialty outpatient clinics, including neurosurgery, plastic surgery, pediatric surgical specialists, prenatal diagnostic providers Third party payers: Children's Medical Services Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in the newborn period: Cardiovascular conditions, renal agenesis/hypoplasia partial & bilateral Conditions warranting chart review beyond the newborn period: Cardiovascular condition Coding: CDC coding system based on BPA, ICD-9-CM, ICD-10-CM for deaths

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.)

Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Stata, version 12.1

Data AnalysisData analysis software: Stata version 12.1 Quality assurance: Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Rates by demographic and other variables

Funding

Funding source: 100% CDC grantWeb site: https://nmtracking.org/en/health_effects/birthdefects/about_birthdefects/

ContactsHeidi R Krapfl, MS NM Department of Health, Epidemiology and Response Division 1190 St. Francis Drive, Suite N1304 Santa Fe, NM 87505 Phone: 505-476-3577 Fax: 505-827-0013 E-mail: [email protected]

Abubakar S Ropri, MPH NM Department of Health, Epidemiology and Response Division 1190 St. Francis Drive, Suite N1305 Santa Fe, NM 87505 Phone: 505-476-3584 Fax: 505-827-0013 E-mail: [email protected]




New York

New York State Congenital Malformations Registry (CMR )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Community outreach and education Partner: Hospitals, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1982 Earliest year of available data: 1983 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 240,000 Statewide: YesCurrent legislation or rule: Public Health Law Article 2, Title II, Section 225(5)(t) and Article 2, Title I, Section 206(1)(j): Codes, Rules and Regulations, Chapter 1, State Sanitary Code, Part 22.3 Legislation year enacted: 1982

Case DefinitionOutcomes covered: Major structural, functional or biochemical abnormality determined genetically or induced during gestation. A detailed list is available upon request. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (All gestational ages, Authority to collect birth defects diagnosed during pregnancy as of 5/25/16) Age: As of 5/25/16: 10 years for heart defects, muscular dystrophy, genetic conditions, FAS; 2 years for all other defects Residence: In-state and out-of-state births to state residents; in-state births to non-residents; all children born in or residing in New York

Surveillance MethodsCase ascertainment: Combination of active and passive case ascertainment; population-based Other state based registries: NYS Dept. of Health statewide hospital discharge database Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics, In regions where active surveillance is conducted. Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics, in regions where active surveillance is conducted. Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, All stillborn infants, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: CDC coding system based on BPA, ICD-9-CM prior to 1992; both ICD-9-CM and ICD-10-CM from August 2014 onward

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, Oracle

Data AnalysisData analysis software: SAS, Access, JAVA Quality assurance: Validity checks, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Education/public awareness

System integrationSystem links: Link case finding data to final birth file, Link to environmental databases

FundingFunding source: 13.6% General state funds, 10.2% MCH funds, 3.4% Genetic screening revenues, 50.2% CDC grant, 13.3% Other federal funding (non-CDC grants), 10% State SuperfundWeb site: http://www.health.ny.gov/birthdefectsSurveillance reports on file: Reports for 1983 - 2008 births

ContactsDeborah J. Fox, MPH New York State Department of Health Empire State Plaza, Corning Tower, Room 1203 Albany, NY 12237 Phone: 518-402-7990 Fax: 518-402-7959 E-mail: [email protected]

Marilyn L. Browne, PhD New York State Department of Health Empire State Plaza, Corning Tower, Room 1203 Albany, NY 12237 Phone: 518-402-7990 Fax: 518-402-7959 E-mail: [email protected]




North Carolina

N.C. Birth Defects Monitoring Program (NCBDMP )

Purpose: Surveillance, Research Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Communicable disease programs; State Laboratory for Public Health Program status: Currently collecting data Start Year: 1987 Earliest year of available data: 1989 Organizational location: Department of Health (State Center for Health Statistics)Population covered annually: 120,000 Statewide: YesCurrent legislation or rule: NCGS 130A-131 Legislation year enacted: 1995 Case DefinitionPregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (All gestational ages) Age: 1 year Residence: NC resident births, including out of state deliveries

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates, Fetal birth certificate Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or charts, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics,Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities Other sources: Positive pulse oximetry screening database

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected procedure codes, Any birth certificate with a birth defect box checked, All stillborn infants, All prenatal diagnosed or suspected cases, Failed newborn pulse oximetry screenConditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: CDC coding system based on BPA


Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access

Data AnalysisData analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link case finding data to final birth file, Link to environmental databases, Early Intervention Program


OtherWeb site: http://www.schs.state.nc.us/units/bdmp/

ContactsRobert E. Meyer, PhD, MPH State Center for Health Statistics 222 N. Dawson St. Raleigh, NC 27603 Phone: 919-733-4728 Fax: 919-733-8485 E-mail: [email protected]

Jennifer Stock State Center for Health Statistics 222 N. Dawson St. Raleigh, NC 27603 Phone: 919-733-4728 Fax: 919-733-8485 E-mail: [email protected]




North Dakota

North Dakota Birth Defects Monitoring System (NDBDMS )

Purpose: Surveillance Partner: Advocacy Groups, Universities, The North Dakota Department of Human Services Program status: Currently collecting data Start Year: 2002 Earliest year of available data: 1994 Organizational location: Department of Health (Maternal and Child Health, Vital Statistics, Division of Children's Special Health Services) Population covered annually: 11,265-This data is for CY 2015. Statewide: YesCurrent legislation or rule: North Dakota Century Code: 1. 23-41-04. Birth report of child with special health care needs made to department. Within three days after the birth in this state of a child born with a visible congenital deformity, the licensed maternity hospital or home in which the child was born, or the legally qualified physician or other person in attendance at the birth of the child outside of a maternity hospital, shall furnish the department a report concerning the child with the information required by the department. 2. 23-41-05. Birth report of child with special health care needs - Use - Confidential. The information contained in the report furnished to the department under section 23-39-04 concerning a child with a visible congenital deformity may be used by the department for the care and treatment of the child pursuant to this chapter.The report is confidential and is solely for the use of the department in the performance of its duties. The report is not open to public inspection nor considered a public record. Legislation year enacted: 1941

Case DefinitionPregnancy outcome: Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: 12 months or within the year of birth. Residence: In-state birth/s to state resident.

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Programs for children with special needs Pediatric & tertiary care hospitals: Specialty outpatient clinics Third party payers: Medicaid databases Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Coding: ICD-9-CM, ICD-10-CM

Data CollectedInfant/fetus: Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, Mainframe, Excel and SPSS

Data AnalysisData analysis software: SPSS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness

System integration System integration: No.

FundingFunding source: 100% State System Development Initiative (SSDI)

OtherWeb site: http://www.ndhealth.gov/cshs/Surveillance reports on file: North Dakota Birth Defects Monitoring System Summary Report 2001-2005 North Dakota Birth Defects Monitoring System Summary Report 1995-1999

ContactsDevaiah Muthappa Muccatira, MS Division of Children's Special Health Services, North Dakota Department of Health 600 East Boulevard Avenue, Dept.301 Bismarck, North Dakota 58505-200 Phone: 701-328-4963 Fax: 701-328-1645 E-mail: [email protected]

Tamara Lynn Lelm, RN,MPH Division of Children's Special Health Services, North Dakota Department of Health 600 East Boulevard Avenue, Dept.301 Bismarck, North Dakota 58505-200 Phone: 701-328-4814 Fax: 701-328-1645 E-mail: [email protected]




Ohio

Ohio Connections for Children with Special Needs (OCCSN )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Ohio Collaborative to Prevent Infant Mortality, ODH Office of Health Preparedness Program status: Currently collecting data Start Year: 2006 Earliest year of available data: 2008 Organizational location: Department of Health (Maternal and Child Health)Population covered annually: 140,000 Statewide: YesCurrent legislation or rule: Ohio Revised Code (ORC) 3705.30-3705.36 authorizes the department to implement a statewide birth defects information system and mandates hospital reporting (2000). Ohio Administrative Code (OAC) 3701-57-01 to 3701-57-04 specifies conditions to be reported and methods for reporting (2010). Legislation year enacted: 2000

Case DefinitionOutcomes covered: Major congenital anomalies recommended by NBDPN and Ohio stakeholders Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Up to 5 years of age Residence: Ohio resident children up to 5 years of age

Surveillance MethodsCase ascertainment: Active Case Finding, Passive case-finding with case confirmation, Passive case-finding without case confirmation, Active case finding for microcephaly, hydrocephaly, arthrogryposis, and brain reduction abnormalities; Passive case-finding with diagnostic v Vital Records: Birth certificates, Death certificates, Matched birth/death fileOther state based registries: Programs for children with special needs, Newborn screening for CCHD data system - electronic birth certificate system Delivery Hospitals: Hospital medical records and other electronic administrative data sets Pediatric & tertiary care hospitals: Discharge summaries, Laboratory logs, Hospital medical records and other electronic administrative data setsOther sources: Genetics Clinic Data within some hospitals

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, ICD-9 and ICD-10 (death certificates) or named congenital anomaly Coding: ICD-9-CM, ICD-10-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.)

Data Collection Methods and StorageData Collection: Electronic file/report submitted by other agencies (hospitals, etc.), Hospital reporters upload file to secure website for integration. Small volume hospitals can manually key data into secure user interface.Database collection and storage: SQL server. External system data methods and storage: ODBC connection with SAS. SAS import of other data sets and merge export of cohort line lists to MS Excel for follow-up.

Data AnalysisData analysis software: SPSS, SAS, MS Excel Quality assurance: Validity checks, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Observed vs. expected analyses, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, OCCSN data system shares common demographic file with Vital Statistics and Genetics Program data systems.


OtherWeb site: http://www.odh.ohio.gov/odhprograms/cmh/bdefects/birthdefects1.aspxSurveillance reports on file: 2012 Annual Report

ContactsAnna Starr, BS Ohio Department of Health 246 N. High Street Columbus, OH 43215 Phone: 614-995-5333 Fax: 614-728-3616 E-mail: [email protected]

Norma Ryan, PhD Ohio Department of Health 246 N. High Street Columbus, OH 43215 Phone: 614-752-9523 Fax: 614-564-2504 E-mail: [email protected]




Oklahoma

Oklahoma Birth Defect Registry (OBDR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Data used to educate public in the Oklahoma initiative to reduce Infant Mortality Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 1992 Organizational location: Department of Health (Screening and Special Services) Population covered annually: 52,000 Statewide: YesCurrent legislation or rule: 63 - 1-550.2 Legislation year enacted: 1992

Case DefinitionPregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: 3 years after delivery Residence: Oklahoma

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates, Medical Examiner's autopsy reports Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries, Specialty outpatient clinics Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.) Other sources: MFM/Neonatology Case Conference

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, All neonatal deaths, All elective abortions, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: CDC coding system based on BPA

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staffDatabase collection and storage: Access

Data AnalysisData analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Needs assessment, Service delivery, Referral, Education/public awareness, Prevention projects

System integrationSystem links: Link case finding data to final birth file


OtherWeb site: http://www.ok.gov/health/Child_and_Family_Health/Screening,_and_Special_Services/Oklahoma_Birth_Defects_Registry_/Surveillance reports on file: Yes

ContactsLisa Canton, MS, RN Oklahoma State Department of Health 1000 N.E. 10th St Room 709 OKC, OK 73117 Phone: 405-271-6617 Fax: 405-271-4892 E-mail: [email protected]




Oregon

Oregon Birth Anomalies Surveillance System (BASS )

Purpose: Surveillance Partner: Hospitals, Advocacy Groups, Universities Program status: Currently collecting data Start Year: 2013 Earliest year of available data: 2008 Organizational location: Department of Health (Maternal and Child Health Section, Center for Prevention and Health Promotion, Oregon Public Health Division, Oregon Health Authority) Population covered annually: 45,000 Statewide: YesCurrent legislation or rule: None

Case DefinitionOutcomes covered: EPHT-12 and NBDPN 12 core anomalies for surveillance and microcephaly cases. Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: 5 years Residence: Oregon resident births (in and out-of-state)

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates Delivery Hospitals: Hospital Discharge Data Pediatric & tertiary care hospitals: Hospital Discharge Data Third party payers: Medicaid databases

Case AscertainmentCoding: ICD-9-CM


Data Collection Methods and StorageData Collection: Administrative data sets: Birth Certificate, Hospital Discharge Data and Medicaid claimsDatabase collection and storage: Access

Data AnalysisData analysis software: SPSS, Access, Link plus Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Observed vs. expected analyses, Epidemiologic studies (using only program data), Education/public awareness

System integrationSystem links: Oregon Environmental Public Health Tracking System

FundingFunding source: 100% Title V funds

OtherWeb site: http://public.health.oregon.gov/HealthyPeopleFamilies/DataReports/Pages/birth-anomalies.aspx

ContactsMary Ann Evans, MS,MPH, Ph.D Maternal and Child Health Section, Center for Prevention and Health Promotion, Oregon Public Health Division. Oregon Health Authority 800 NE Oregon St, Suite 850 Portland, OR 97232 Phone: 971-673-1499 E-mail: [email protected]

Claudia Bingham, MPH Maternal and Child Health Section, Center for Prevention and Health Promotion, Oregon Public Health Division. Oregon Health Authority 800 NE Oregon St, Suite 850 Portland, OR 97232 Phone: 971-673-0253 E-mail: [email protected]




Pennsylvania

Pennsylvania Birth Defects Surveillance Database (BDSS )

Program status: No surveillance program ContactsKelly L Holland PA Department of Health, Bureau of Family Health 625 Forster Street, Health & Welfare Bldg. 7th Floor East Harrisburg, PA 17120 Phone: 717-783-8143 Fax: 717-772-0323 E-mail: [email protected]




Puerto Rico

Puerto Rico Birth Defects Surveillance and Prevention System (PRBDSS )

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1995 Earliest year of available data: 1995 Organizational location: Department of Health (Services for Children with Special Medical Needs Division) Population covered annually: 38,000 Statewide: YesCurrent legislation or rule: Law #351 Legislation year enacted: 38246

Case DefinitionOutcomes covered: Selected birth defects covered: Neural Tube defects, microcephaly, holoprocencephaly, cleft lip and/or cleft palate, anotia, microtia, anophthalmia, microphthalmia, limb defects, talipes equinovarus, gastrochisis, omphalocele, craneosinostosis, Trisomy 13, 18 and 21, Truner's syndrome, 22q11.2 deletion syndrome, Albinism, Jarcho-Levin syndrome, Prader Willi syndrome, major congenital heart defects, ambiguous genitalia, Hypospadias , and bladder extrophy. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (All gestational ages) Age: Up to 6 years after delivery Residence: In-state births to state residents

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs Third party payers: Medicaid databases, Health Maintenance organizations (HMOs) Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, Cardiovascular condition Coding: ICD-9-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care, Prenatal diagnostic information Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access

Data AnalysisData analysis software: SPSS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects


OtherWeb site: http://www.salud.gov.pr/Programas/CampanaAcidoFolico/Pages/default.aspxSurveillance reports on file: Puerto Rico Birth Defects Annual Report 2012 and 2010

ContactsAlma M Martinez, MPH Puerto Rico Department of Health PO Box 70184 San Juan, PR 936 Phone: (787)765-2929 xt.4571 E-mail: [email protected]

Miguel Valencia, MD Puerto Rico Department of Health PO Box 70184 San Juan, PR 936 Phone: (787)765-2929 xt.4572 E-mail: [email protected]




Rhode Island

Rhode Island Birth Defects Program

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Services Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Community Nursing Services, Early Childhood Prevention Programs, Families Program status: Currently collecting data Start Year: 2000 Earliest year of available data: 2002 Organizational location: Department of Health (Center for Health Data and Analysis) Population covered annually: 10,800 Statewide: YesCurrent legislation or rule: Title 23, Chapter 13.3 of Rhode Island General Laws requires the development of a birth defects surveillance, reporting, and information system that will a) describe the occurrence of birth defects in children up to age five; b) detect trends of morbidity and mortality; and c) identify newborns and children with birth defects to intervene on a timely basis for treatment. Legislation year enacted: 2003

Case DefinitionOutcomes covered: All birth defects and genetic diseases Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Birth up to 5 years Residence: RI maternal residence

Surveillance MethodsCase ascertainment: Combination of active and passive case ascertainment Vital Records: Birth certificates, Death certificates, Matched birth/death fileOther state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, RI has an integrated child health information system called KIDSNET, which links data from 10 programs including: Newborn Developmental Risk Delivery Hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities, Maternal serum screening facilities Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, All stillborn infants, All elective abortions, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases, Chart reviews are conducted for infants born at the regional perinatal center and the 5 other maternity hospitals who were identified with an ICD-9-CM code 740-759 and 760.71, and other sentinel conditions Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: ICD-9-CM, ICD-10-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, Oracle

Data AnalysisData analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, KIDSNET, hospital discharge data System integration: Integrated into KIDSNET for web-based provider reporting

FundingFunding source: 5% General state funds, 10% MCH funds, 85% CDC grant

OtherWeb site: www.health.ri.gov/programs/birthdefectsSurveillance reports on file: 2014 Rhode Island Birth Defects Data Book

ContactsSamara Viner-Brown, MS Rhode Island Department of Health 3 Capitol Hl Providence, RI 2908 Phone: (401)222-5122 E-mail: [email protected]

William Arias, MPH Rhode Island Department of Health 3 Capitol Hl Providence, RI 2908 Phone: (401)222-7930 E-mail: [email protected]




South Carolina

South Carolina Birth Defects Program (SCBDP )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Greenwood Genetics Center (GGC) Program status: Currently collecting data Organizational location: Department of Health (Maternal and Child Health)Population covered annually: 57,100 Statewide: YesCurrent legislation or rule: A281, R308, H4115 Legislation year enacted: 2004

Case DefinitionOutcomes covered: Central nervous system defects, eye and ear defects, cardiovascular defects, orofacial defectcts, gastrointestinal defects, genitourinary defects, musculoskeletal defects, and chromosomal defects Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Up to two years of age Residence: In-state births to state residents

Surveillance MethodsCase ascertainment: Active Case Finding Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate, Elective termination certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Disease index or discharge index, Discharge summaries, Postmortem/pathology logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetic facilities Other sources: Physician reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: ICD-9-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Access, SQL Server

Data AnalysisData analysis software: SAS, Access, Arc-GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Time-space cluster analyses, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link case finding data to final birth file System integration: SCBDP data is integrated with SC Vital Records.


OtherWeb site: http://www.scdhec.gov/Health/FamilyPlanning/DataStaticsonPregnancyBabyHealth/BirthDefects/

ContactsVinita Oberoi Leedom, MPH, CIC SC Department of Health and Environmental control 2100 Bull Street Columbia, SC 29201 Phone: 803-898-0771 Fax: 803-898-2065 E-mail: [email protected]

Michael Grady Smith, DrPH SC Department of Health and Environmental Control 2100 Bull Street Columbia, SC 29201 Phone: 803-898-3740 Fax: 803-898-2065 E-mail: [email protected]




South Dakota

Program status: No surveillance program ContactsLinda Ahrendt SD Dept Health 600 E. Capitol Ave. Pierre, SD 57501 Phone: 605-773-3361 Fax: 605-773-5683 E-mail: [email protected]




Tennessee

Tennessee Birth Defects Registry (TBDR )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals, Universities, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start Year: 2000 Earliest year of available data: 1999 Organizational location: Department of Health (Vital Statistics, Office of Healthcare Statistics, Division of Policy Planning and Assessment) Population covered annually: 85,000 Statewide: YesCurrent legislation or rule: TCA 68-5-506 Legislation year enacted: 2000

Case DefinitionOutcomes covered: 45 major structural birth defects Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (Prior to July 1st 2010: 500 grams or more, or in the absence of weight, 22 completed weeks of gestation or more; July 1st 2010 and later: 350 gra Age: Up to one year after delivery Residence: In and out of state births to state residents

Surveillance MethodsCase ascertainment: population-based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Newborn metabolic screening program, Hospital Discharge Data System Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinicsPediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics Other sources: Midwifery Facilities

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), All stillborn infants, ICD-9-CM code 760.71 Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: ICD-9-CM


Data Collection Methods and StorageData Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, SQL and SAS

Data AnalysisData analysis software: SAS, Arc-GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Education/public awareness



OtherWeb site: www.tn.gov/healthSurveillance reports on file: Tennessee Birth Defects Registry 2007-2012

ContactsRamona Lainhart, PhD Division of Policy Planning and Assessment Tennessee Department of Health 710 James Robertson Parkway, 2nd Floor Nashville, TN 37243Phone: 615-253-3403 Fax: 615-253-5187 E-mail: [email protected]




Texas

Texas Birth Defects Epidemiology and Surveillance Branch (TBDES )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Legislators, Researchers (NBDPN, NBDPS, ICBDSR)Program status: Currently collecting data Start Year: 1994 Earliest year of available data: 1996 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 387,110 in 2013 Statewide: YesCurrent legislation or rule: Health and Safety Code, Title 2, Subtitle D, Section1, Chapter 87 Legislation year enacted: 1993

Case DefinitionOutcomes covered: All major structural birth defects and fetal alcohol syndrome. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: Up to one year after delivery and up to 6 years for FAS, special studies and childhood genetic disorders diagnosed after infancy. Residence: In and out of state births to state residents

Surveillance MethodsCase ascertainment: Active Case Finding, Population-based Vital Records: Fetal death certificates for delivery year 2009 to present Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics, Genetics, stillbirths and radiology logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics, genetics, stillbirths and radiology logs Other sources: Midwifery Facilities, Licensed birthing centers

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Infants with low birth weight or low gestation (<34 weeks GA ), All stillborn infants Conditions warranting chart review beyond the newborn period: CNScondition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, Any infant with a codable defect Coding: CDC coding system based on BPA

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history

Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Oracle

Data AnalysisData analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Clinical review, Timeliness, Re-casefinding, re-review of medical records Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Referral, Grant proposals, Education/public awareness, Prevention projects

System integrationSystem links: Link to other state registries/databases, Link to environmental databases, link registry to vital records for demographic data, special projects linking to other files (Texas Health Data for geocodes, Newborn Screening data).


OtherWeb site: www.dshs.state.tx.us/birthdefects/Surveillance reports on file: See website for publication and surveillance reports

ContactsMark A Canfield, PhD Birth Defects Epidemiology and Surveillance Branch P.O. Box 149347, Mail Code 1964 Austin, TX 78714-9347 Phone: 512-776-7232 Fax: 512-776-7330 E-mail: [email protected]

Lisa K Marengo, MS Birth Defects Epidemiology and Surveillance Branch P.O. Box 149347, Mail Code 1964 Austin, TX 78714-9347 Phone: 512-776-6657 Fax: 512-776-7330 E-mail: [email protected]




Utah

Utah Birth Defect Network (UBDN )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services, Education Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1994 Earliest year of available data: 1994 Organizational location: Department of Health (CSHCN) Population covered annually: 55,000 Statewide: YesCurrent legislation or rule: Birth Defect Rule (R398-5) Legislation year enacted: 1999

Case DefinitionOutcomes covered: Major structural malformations; newborn metabolic conditions; stillbirths Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective terminations (All gestational ages) Age: 2 years based on mandatory reporting Residence: Maternal residence in Utah at time of delivery

Surveillance MethodsCase ascertainment: Combination of active and passive case ascertainment; population-based Vital Records: Birth certificates, Death certificates, Fetal birth certificate Other state based registries: Newborn hearing screening program, Newborn metabolic screening program, CCHD screening program, Autism Registry Delivery Hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Postmortem/pathology logs, Specialty outpatient clinics, Champions report live births delivered at their respective hospitals Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetic facilities Other sources: Midwifery Facilities, Physician reports, Lay midwives

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with a CDC/BPA code, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases, All fetal death certificates, NICU reports, infant deaths are reviewed Conditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, Failure to thrive, Cardiovascular condition, All infant deaths (excluding prematurity), Childhood deaths between 1 and 6, Any infant with a codable defect Coding: CDC coding system based on BPA

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth

measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Family history

Data Collection Methods and StorageData Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff using remote access from office (laptop, web-based, etc.)Database collection and storage: Access

Data AnalysisData analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness, Logical checks, duplicate check in tracking and surveillance module, case record form checked for completeness, timelin Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Referral, Grant proposals, Education/public awareness, Prevention projects, Oral Facial Cleft Case-Control Study, UT Center for Birth Defects Research and Prevention, International Clearinghouse for Birth Defects, Local studies

System integrationSystem links: Link to other state registries/databases, Link to environmental databases, Link to Utah genealogic population database, Link to vital records System integration: The database is linked with birth, death, and pulse oximetry screening data. Newborns having failed Pulse Oximetry Screening are integrated with UBDN.


OtherWeb site: http://www.health.utah.gov/birthdefectSurveillance reports on file: Http://ibis.health.utah.gov Additional information on file: Scientific Collaboration Protocol

Comments: IBIS indicators for specific birth defects are online.

ContactsAmy E Nance, MPH Utah Birth Defect Network 44 N Mario Capecchi Drive, PO Box 144699 Salt Lake City, UT 84114 Phone: 801-883-4661 Fax: 801-323-1578 E-mail: [email protected]



Birth Defects Research (Part A) 106: S1-S177 (2016)Birth Defects Research (Part A) 106: S1-S177 (2016)

VermontBirth Information Network (BIN )

Purpose: Surveillance, Referral to Services Partner: Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs, Hospital AssociationProgram status: Currently collecting data Start Year: 2006 Earliest year of available data: 2006 Organizational location: Department of Health (Division of Health Surveillance / Statistics) Population covered annually: 6,200 Statewide: YesCurrent legislation or rule: Act 32 (TITLE 18 VSA §5087) Legislation year enacted: 2003

Case DefinitionPregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 week gestation and greater or a birth weight of more than 400 grams) Age: Up to one year after delivery Residence: In and out of state births to state residents

Surveillance MethodsCase ascertainment: Passive case-finding with case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries, Specialty outpatient clinics Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Third party payers: Medicaid databases, Multi-payer claims database Other specialty facilities: Cytogenetic laboratories Other sources: Physician reports, Autopsy reports

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with selected procedure codes, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, Any chart with an ICD-9-CM or ICD-10-CM code corresponding to a condition monitored by Vermont's registry. Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: ICD-9-CM, ICD-10-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Tests and procedures, Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Pregnancy/delivery complications, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access

Data AnalysisData analysis software: SPSS, Access, Excel Quality assurance: Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Observed vs. expected analyses, Referral, Grant proposals, Education/public awareness


FundingFunding source: 5% General state funds, 95% CDC grant

OtherWeb site: http://healthvermont.gov/tracking/health_birthdefects.aspx

ContactsBrennan Martin, MPH Vermont Department of Health P.O. Box 70, 108 Cherry Street Burlington, VT 5402 Phone: 802-863-7611 Fax: 802-865-7701 E-mail: [email protected]

Peggy Brozicevic, B.A. Vermont Department of Health P.O. Box 70, 108 Cherry Street Burlington, VT 5402 Phone: 802-863-7298 Fax: 802-865-7701 E-mail: [email protected]




Virginia

Virginia Congenital Anomalies and Reporting Education System (VaCARES )

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Local Health Departments, Hospitals Program status: Currently collecting data Start Year: 1985 Earliest year of available data: 2004 Organizational location: Department of Health (Office of Family Health Services, Division of Child and Family Health) Population covered annually: 101,000 Statewide: YesCurrent legislation or rule: Code of Virginia, § 32.1-69.1 Legislation year enacted: 1985

Case DefinitionOutcomes covered: Major and non-major birth defects Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Up to 2 years of age Residence: Any diagnoses occurring in-state

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery Hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries Other specialty facilities: Genetic counseling/clinic genetic facilities

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease) Coding: ICD-9-CM, ICD-10 as of October 1, 2015

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Infant complications, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Pregnancy/delivery complications Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.)Database collection and storage: Oracle, Web-based reporting system is linked to electronic birth certificate and populates Oracle data tables

Data AnalysisData analysis software: SAS Quality assurance: Validity checks Data use and analysis: Public health program evaluation, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Needs assessment, Referral, Grant proposals, Education/public awareness

System integrationSystem links: Link to other state registries/databases, Link case finding data to final birth file System integration: VaCARES is part of the Virginia Vital Events Screening and Tracking System, which also houses electronic birth certificate reporting and the Virginia Early Hearing Detection and Intervention tracking.

FundingFunding source: 97% MCH funds, 3% Genetic screening revenuesWeb site: http://www.vdh.virginia.gov/livewell/programs/vacares/

ContactsJennifer Olsen Macdonald, MPH, BSN, RN Virginia Department of Health 109 Governor Street Richmond, VA 23219 Phone: (804) 864-7729 E-mail: [email protected]

Elizabeth Martha Musser, MPH, BS Virginia Department of Health 109 Governor Street Richmond, VA 23219 Phone: 804-864-7767 E-mail: [email protected]




Washington

Washington State Birth Defects Surveillance System (BDSS )

Purpose: Surveillance Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Universities Program status: Currently collecting data Earliest year of available data: 1987 Organizational location: Department of Health (Office of Healthy Communities) Population covered annually: 90,000 Statewide: YesCurrent legislation or rule: Notifiable Conditions: WAC 246-101 Legislation year enacted: 2000 Case DefinitionPregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: We ascertain cases through 1 year of age for structural defects and to age 10 for FAS/FAE, Cerebral Palsy and Autism Residence: Resident births; children born, diagnosed, or treated in-state

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Matched birth/death file, Fetal birth certificate Other state based registries: Programs for children with special needs Delivery Hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Disease index or discharge index

Case AscertainmentCoding: ICD-9-CM

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Tests and procedures, Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.) Father: Identification information (name, address, date-of-birth, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Case-finding Log listing of all data elements required for each case are completed by Medical Records staff, sometimes in conjunction with hospital Information Systems staff. Several facilities submit print-outs from data query of internal system of discharge data. Minimal use of diskette or other forms of electronic data transfer. A web-based reporting system is currently in development.

Database collection and storage: Web-based SQL server

Data AnalysisData analysis software: SAS, Stata Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Education/public awareness

System integrationSystem links: Link case finding data to final birth file, CSHCN program participant file


ContactsKevin Beck, MA Washington Dept. of Health PO Box 47835 Olympia, WA 98504-7835 Phone: 360-236-3492 Fax: 360-236-2323 E-mail: [email protected]

Riley Peters, PhD Washington Dept. of Health; Maternal and Child Health; CSHCN PO Box 47835 Olympia, WA 98504-7835 Phone: 360-236-3581 Fax: 360-236-2323 E-mail: [email protected]




West Virginia

West Virginia Birth Defects Surveillance System

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Services Partner: Hospitals, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 1989 Earliest year of available data: 1989 Organizational location: Department of Health (Maternal and Child Health)Population covered annually: 21,000 Statewide: YesCurrent legislation or rule: WV State Code 16-5-12a

Case DefinitionOutcomes covered: ICD-9-CM codes 740-759, 760, 764, 765, 766 with transition to ICD-10 Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective terminations (20 weeks gestation and greater) Age: 0-6 years Residence: In and out of state births to state residents

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal birth certificate, Elective termination certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Infant and Maternal Mortality Review Panel Delivery Hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries Other sources: Pediatric referrals of children not identified on birth certificate

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Any chart with selected defects or medical conditions (i.e. abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, Infants with low birth weight or low gestation (<2500 grams or <37 weeks ), All stillborn infants, All neonatal deaths, All elective abortions, All infants in NICU or special care nursery Conditions warranting chart review beyond the newborn period: Facialdysmorphism or abnormal facies, Failure to thrive, Developmental delay, CNS condition (e.g. seizure), GI condition (e.g. intestinal blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, All infant deaths (excluding prematur Coding: ICD-9-CM, transitioning to ICD-10

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care, Prenatal diagnostic information, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access

Data AnalysisData analysis software: Access Quality assurance: Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects



OtherWeb site: http://wvdhhr.org/omcfh

ContactsKathy Cummons, MSW Research, Evaluation and Planning Division 350 Capitol St. Room 427 Charleston, WV 25301 Phone: 304-558-5388 Fax: 304-558-3510 E-mail: [email protected]

Melissa A. Baker, MA Office of Maternal, Child and Family Health 350 Capitol St. Room 427 Charleston, WV 25301 Phone: 304-356-4438 Fax: 304-558-3510 E-mail: [email protected]




Wisconsin

Wisconsin Birth Defect Prevention and Surveillance System (WBDPSS )

Purpose: Surveillance, Research, Referral to Services Partner: Local Health Departments, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Universities, Early Childhood Prevention Programs Program status: Currently collecting data Start Year: 2004 Earliest year of available data: 2005 Organizational location: Department of Health (Maternal and Child Health, Department of Health Services, Division of Public Health) Population covered annually: average 69,000 Statewide: YesCurrent legislation or rule: State statute 253.12 Birth defect prevention and surveillance system. Enacted December 2000. Department of Health Services rules, Chapter DHS 116 Wisconsin Birth Defect Prevention and Surveillance System. Enacted April 2003. Legislation year enacted: 2000

Case DefinitionOutcomes covered: A list of 87 specific birth defects are collected. The list may be viewed on our website at https://www.dhs.wisconsin.gov/cyshcn/birthdefects/index.htm. It is an appendix to the reporting form DPH 40054. The list was developed by the Scientific Committee of the Council on Birth Defect Prevention and Surveillance and is included as an appendix in the rules. Pregnancy outcome: Livebirths (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Up to 2 years after delivery Residence: All children born in and/or receiving services in the state

Surveillance MethodsCase ascertainment: Passive case-finding without case confirmation, Work with reporters who report batches from EMRs to assure reporting qualityVital Records: Matched birth/death file, compare registry reports to vital records periodically for selected birth defects Case AscertainmentCoding: ICD-9-CM, State assigned codes assigned to all conditions collected. Reporters combine ICD-9-CM or ICD-10 with text searches to derive defects that share an ICD code.

Data CollectedInfant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgars, etc.), Birth defect diagnostic informationMother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageData Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Can submit one report on the website or upload multiple reports. A paper form is also available that is entered by state birth defects staff.Database collection and storage: Oracle

Data AnalysisData analysis software: SAS Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Rates by demographic and other variables, Time trends, Observed vs. expected analyses, Referral, Grant proposals, Prevention projects

FundingFunding source: 100% birth certificate feesWeb site: https://www.dhs.wisconsin.gov/cyshcn/birthdefects/index.htmSurveillance reports on file: Posted on the website

ContactsElizabeth Oftedahl, MPH Wisconsin Department of Health Services, Division of Public Health 1 W Wilson St Madison, WI 53703 Phone: 608-261-9304 Fax: 608-267-3824 E-mail: [email protected]

Peggy Helm-Quest, MSEd, MHSA Wisconsin Department of Health Services, Division of Public Health 1 W Wilson St Madison, WI 53703 Phone: 608-267-2945 Fax: 608-267-3824 E-mail: [email protected]




Wyoming

Program status: Interested in developing a surveillance program ContactsAmy Spieker, MPH Wyoming Department of Health 6101 Yellowstone Rd, Ste 420 Cheyenne, WY 82002 Phone: 307-777-5769 Fax: 307-777-8687 E-mail: [email protected]

Ashley Busacker, PhD CDC/WDH 6101 Yellowstone Rd, Ste 510 Cheyenne, WY 82002 Phone: 307-777-6936 E-mail: [email protected]




Department of Defense

United States Department of Defense (DoD) Birth and Infant Health Registry

Purpose: Surveillance, Research Partner: Hospitals, Universities, Other DoD Programs Program status: Currently collecting data Start Year: 1998 Earliest year of available data: 1998 Organizational location: Deployment Health Research Department, Naval Health Research Center Population covered annually: Approximately 100,000 per year Statewide: No, National/Worldwide; includes all DoD beneficiaries Current legislation or rule: Assistant Secretary of Defense, Health Affairs Policy Memorandum Legislation year enacted: 1998

Case DefinitionOutcomes covered: Outcomes include those birth defects listed in the case definition of the National Birth Defects Prevention Network. For a birth defect to be represented, the diagnosis must appear at least once in an inpatient record, or at least twice on two separate dates for outpatient encounters. Same sex multiples are excluded from analysis. Pregnancy outcome: Livebirths (All gestational ages and birth weights) Age: Birth up to one year after delivery Residence: Worldwide; any birth to a US military beneficiary

Surveillance MethodsCase ascertainment: Active Case Finding, Passive case-finding with case confirmation, Passive case-finding without case confirmation, Electronic diagnostic codes from all inpatient and outpatient healthcare encounters of US military beneficiaries at both civilian and militar Delivery Hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics, All inpatient and outpatient encounters at both civilian and military care facilities are captured in standardized DoD data Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics, All inpatient and outpatient encounters at both civilian and military care facilities are captured in standardized DoD data Third party payers: All inpatient and outpatient encounters at both civilian and military care facilities are captured in standardized DoD data Other sources: Validation of standardized electronic data performed by active case ascertainment and chart review of a random sample of births from military facilities

Case AscertainmentConditions warranting chart review in the newborn period: Any chart with an ICD-9-CM code 740-759, Any chart with a selected list of ICD-9-CM codes outside 740-759, Validation of standardized electronic data performed by active case ascertainment and chart review of a random sample of births from military healthcare facilities Conditions warranting chart review beyond the newborn period: Anyinfant with a codable defect Coding: ICD-9-CM


Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions

Data Collection Methods and StorageData Collection: Electronic file/report submitted by other agencies (hospitals, etc.)Database collection and storage: Access, SAS

Data AnalysisData analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigations, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Prevention projects, Monitor birth defect outcomes following specific parental or gestational exposures of concern

System integrationSystem links: DoD databases System integration: DoD databases

FundingFunding source: 100% Other federal funding (non-CDC grants)

OtherWeb site: http://www.med.navy.mil/sites/nhrc/Pages/Research-and-Development-Focus-Areas.aspx?Category=MILITARY-RANDDFOCUSSurveillance reports on file: DoD/Health Affairs policy memorandum; annual reports

ContactsAva Marie S. Conlin, DO, MPH Deployment Health Research Department, Dept 164, Naval Health Research Center 140 Sylvester Road San Diego, CA 92106-3521 Phone: 619-553-9255 Fax: 619-767-4806 E-mail: [email protected]

Gia R. Gumbs, MPH DoD Birth and Infant Health Registry 140 Sylvester Road San Diego, CA 92106-3521 Phone: 619-553-9255 Fax: 619-767-4806 E-mail: [email protected]



major birth defects from population-based birth defects ... · for the 47 major birth defects....

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