major birth defects data from population-based birth defects...

Major Birth Defects Data from Population-based Birth Defects Surveillance Programs in

the United States, 2006-2010

Updated August 2013

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

Disease Control and Prevention

This report contains data from 41 population-based birth defects programs. These include:

Alaska Birth Defects Registry; 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 Surveillance

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

(Georgia); Illinois Adverse Pregnancy Outcomes Reporting System; Indiana Birth Defects &

Problems Registry; Iowa Registry For Congenital and Inherited Disorders; Kansas Birth Defects

Information System; Kentucky Birth Surveillance Registry; Louisiana Birth Defects Monitoring

Network; Maine Birth Defects Program; Maryland Birth Defects Reporting and Information

System; Massachusetts Center For Birth Defects Research And Prevention; Michigan Birth

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

Registry; Nebraska Birth Defects Registry; Nevada Birth Outcomes Monitoring System; New

Hampshire Birth Conditions Program; New Jersey Special Child Health Services Registry; New

York State Congenital Malformations Registry; North Carolina Birth Defects Monitoring

Program; North Dakota Birth Defects Monitoring System; Ohio Connections For Children With

Special Needs; Oklahoma Birth Defects Registry; 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 Reporting And Education System; Washington State Birth Defects Surveillance

System; West Virginia Congenital Abnormalities Registry, Education and Surveillance System;

Wisconsin Birth Defects Registry; and the United States Department of Defense Birth and Infant

Health Registry.

Additional information and program contacts on population-based birth defects surveillance

programs are available on page S122.

STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DATA S1

Birth Defects Research (Part A) 99 (10):S1-S172 (2013)

AlaskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)AlaskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)

Maternal Race/Ethnicity

DefectNon-Hispanic White

AmericanIndian orAlaska Native Total** Notes

Anencephalus <6.

<6.

112.0

Anophthalmia/microphthalmia <6.

<6.

112.0

Anotia/microtia 102.9

117.9

223.9

Aortic valve stenosis 61.8

00.0

61.1

Atrial septal defect 434127.8

13395.1

878157.4

Atrioventricular septal defect (endocardial cushion defect) 185.3

117.9

346.1

Biliary atresia <6.

1410.0

183.2

Choanal atresia 82.4

<6.

152.7

Cleft lip with and without cleft palate 4613.5

5337.9

11220.1

Cleft palate without cleft lip 308.8

6345.1

9917.7

Coarctation of aorta 205.9

85.7

305.4

Common truncus <6.

<6.

101.8

Congenital cataract 113.2

1712.2

325.7

Congenital hip dislocation 7421.8

2820.0

11420.4

Diaphragmatic hernia 123.5

1812.9

325.7

Down syndrome (Trisomy 21) 4413.0

2820.0

8715.6

Ebstein anomaly <6.

<6.

81.4

Encephalocele 102.9

117.9

234.1

Epispadias 82.4

<6.

101.8

Esophageal atresia/tracheoesophageal fistula 61.8

75.0

152.7

Hirschsprung disease (congenital megacolon) 205.9

1611.4

417.3

Hydrocephalus without spina bifida 247.1

1712.2

559.9

Hypoplastic left heart syndrome 102.9

<6.

152.7

Hypospadias* 209118.9

4765.2

304105.5

Microcephalus 5215.3

4431.5

10619.0

Obstructive genitourinary defect 19758.0

8460.1

32157.5

Patent ductus arteriosus 26578.0

170121.6

51291.8

1

Pulmonary valve atresia and stenosis 3610.6

4028.6

8415.1

Pyloric stenosis 7421.8

6345.1

14425.8

Rectal and large intestinal atresia/stenosis 329.4

2215.7

5810.4

Reduction deformity, lower limbs 267.7

1611.4

488.6

Reduction deformity, upper limbs 123.5

107.2

274.8



AlaskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)




Renal agenesis/hypoplasia 247.1

117.9

427.5

Spina bifida without anencephalus 185.3

128.6

315.6

Tetralogy of Fallot 133.8

1510.7

315.6

Total anomalous pulmonary venous return (TAPVR) <6.

64.3

122.2

Transposition of great arteries - All 133.8

128.6

264.7

Tricuspid valve atresia and stenosis <6.

<6.

61.1

Trisomy 13 <6.

<6.

71.3

Trisomy 18 <6.

<6.

101.8

Ventricular septal defect 25274.2

256183.1

55399.1

2

Total Live Births 33969.

13983.

55785.

Total Male Live Births 17572.

7208.

28802.

*Hypospadias: prevalence per 10,000 male live births**Total includes unknown race



AlaskaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)AlaskaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age

Defect Less than 35 35 and greater Total** NotesDown syndrome (Trisomy 21) 49

10.03856.1

8715.6

Trisomy 13 51.0

23.0

71.3

Trisomy 18 40.8

68.9

101.8


60975.

502065.

**Total includes unknown maternal age

Notes1.Patent ductus arteriosus - only includes those with birth weight greater or equal to 2500 grams2.Ventricular septal defect - The ABDR is a passive surveillance system. Reports are not submitted as 'probable'. However, the ABDR does not conductcase verification on these reports.

General comments-Alaska conducts surveillance for FAS using FASSNET methodology. Contact the program for data on FAS and FASD.-Cases matched to Alaska birth certificates only; birth cohort 2002-2006 for major anomalies only (see attached lists of ICD9 codes).-Data was indicated by race for non-Hispanic White and non-Hispanic AK Native only. Live birth numbers were queried from VS data sets and not frompublished VS data as VS does not publish breakdowns on these two races with indicated ethnicity.-Gastroschisis and omphalocele are not separated and are reported under the same ICD9 code.-The ABDR does not collect data on still births or terminations; live birth information only.-The ABDR does not collect or provide information on amniotic bands.-The ABDR does not provide data to any other state agency for the purpose of further metabolic and/or medical testing.-The ABDR does not provide numbers for cells with <6 cases.-The Alaska Birth Defects Registry does not provide data on individual years within the birth cohort; only totals by race and age are presented withindividual year data.-The Alaska Birth Defects Registry uses the ICD-9 coding system.



ArizonaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)ArizonaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)



Non-Hispanic Blackor African Hispanic

Asian or PacificIslander


Anencephalus 190.9

31.5

452.2

10.6

31.0

721.5

Aniridia 20.1

00.0

20.1

10.6

00.0

50.1

Anophthalmia/microphthalmia 100.5

10.5

241.2

10.6

31.0

400.8


00.0

331.6

31.9

72.3

571.2

1


42.1

462.2

21.3

41.3

901.9

Atrioventricular septal defect(endocardial cushion defect)

20.1

00.0

00.0

00.0

00.0

20.0

Biliary atresia 40.2

21.0

50.2

21.3

20.7

150.3

Bladder exstrophy 20.1

00.0

50.2

00.0

00.0

70.1


10.5

160.8

00.0

10.3

400.8


147.2

23411.3

127.6

6120.0

51410.6


73.6

1346.5

148.9

196.2

2986.2


63.1

813.9

63.8

134.3

2124.4

Common truncus 80.4

21.0

100.5

10.6

10.3

230.5


00.0

170.8

00.0

31.0

290.6


31.5

442.1

21.3

82.6

972.0


199.8

25312.2

1610.2

3511.5

57111.8

Ebstein anomaly 130.6

00.0

150.7

21.3

51.6

360.7

Encephalocele 90.4

10.5

160.8

21.3

41.3

320.7

Esophageal atresia/tracheoesophagealfistula

512.5

31.5

432.1

10.6

41.3

1022.1

Gastroschisis 934.6

63.1

974.7

74.5

247.9

2354.9

Hirschsprung disease (congenitalmegacolon)

281.4

31.5

261.3

21.3

00.0

611.3


84.1

472.3

42.5

123.9

1322.7

Omphalocele 341.7

31.5

371.8

74.5

41.3

871.8


52.6

1004.8

85.1

185.9

2214.6

Pulmonary valve atresia 391.9

31.5

422.0

42.5

62.0

972.0


63.1

231.1

10.6

20.7

430.9


73.6

492.4

21.3

93.0

1072.2


73.6

793.8

31.9

165.3

1733.6


52.6

824.0

53.2

175.6

1994.1

Total anomalous pulmonary venous return(TAPVR)

51.3

00.0

41.2

00.0

23.5

111.3


52.6

532.6

53.2

51.6

1202.5

dextro-Transposition of great arteries(d-TGA)

482.4

52.6

422.0

42.5

41.3

1062.2



ArizonaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Tricuspid valve atresia and stenosis 20.5

00.0

20.6

00.0

00.0

40.5

Tricuspid valve atresia 20.5

00.0

20.6

00.0

00.0

40.5

Trisomy 13 160.8

42.1

241.2

74.5

20.7

531.1

Trisomy 18 361.8

31.5

351.7

53.2

103.3

891.8


00.0

112.4

00.0

58.1

232.3


19366.

207183.

15693.

30448.

482974.




ArizonaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)ArizonaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.425841.5

57111.8

Trisomy 13 370.9

162.6

531.1

Trisomy 18 581.4

304.8

891.8


62242.

482974.


Notes1.Only reportable if occurring with confirmed hearing loss.

General comments-ABDMP provides data on 30 categories of birth defects through 2009, and 32 categories beginning in 2010.-ABDMP tables include only confirmed cases with 'most likely,' 'probable,' or 'precise' diagnoses. 'Possible' diagnoses are not included.-In this data submission, ABDMP adhered to the requested race/Hispanic categories. However, for traditional in-state reports ABDMP categorizesWhites as Hispanic or non-Hispanic, and for other races (i.e. Black, Asian, and American Indian) retains the single race code regardless of their Hispanicdesignation.-Registration of liveborn cases by ABDMP requires an Arizona live birth certificate.-Stillbirths are included in this report if there is an Arizona fetal death certificate, regardless of fetal weight or gestational age.-Terminations are not included in ABDMP data reports.



ArkansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)ArkansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 272.0

112.8

31.4

12.3

00.0

422.1

Anencephalus 473.5

61.6

136.1

00.0

00.0

663.3

Aniridia 30.2

10.3

00.0

00.0

00.0

40.2


41.0

31.4

00.0

19.2

321.6


20.5

198.9

12.3

00.0

442.2


51.3

62.8

00.0

00.0

703.5


10226.4

5927.7

1943.7

546.1

60830.4


1007.4

277.0

104.7

49.2

00.0

1417.0


20.5

00.0

12.3

00.0

70.3


10.3

00.0

00.0

00.0

50.2


41.0

00.0

00.0

19.2

120.6


318.0

167.5

24.6

00.0

21710.8


235.9

115.2

00.0

19.2

1417.0


205.2

125.6

00.0

00.0

1457.2

Common truncus 90.7

30.8

20.9

12.3

00.0

150.7


133.4

73.3

12.3

19.2

753.7


30.8

31.4

12.3

00.0

241.2


92.3

52.3

00.0

00.0

623.1


266.7

3315.5

36.9

00.0

23811.9


20.5

41.9

00.0

19.2

180.9

Encephalocele 141.0

112.8

41.9

00.0

00.0

291.4

Epispadias 90.7

10.3

00.0

00.0

00.0

100.5


483.6

82.1

31.4

24.6

00.0

613.0

Gastroschisis 957.1

194.9

94.2

12.3

218.5

1266.3


403.0

112.8

20.9

12.3

00.0

542.7


235.9

146.6

24.6

00.0

1105.5


133.4

10.5

12.3

19.2

753.7


13166.9

2725.1

1045.0

7129.2

79777.7

Microcephalus 251.9

102.6

62.8

36.9

19.2

452.2


5514.2

3516.4

511.5

218.5

31715.8

Omphalocele 272.0

184.7

31.4

00.0

00.0

482.4


328.3

209.4

511.5

327.7

1728.6

1



ArkansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







5414.0

2712.7

920.7

218.5

27613.8


41.0

31.4

12.3

00.0

160.8


318.0

5927.7

36.9

327.7

37918.9


277.0

209.4

511.5

19.2

1467.3


174.4

41.9

00.0

00.0

532.6


112.8

125.6

613.8

00.0

984.9


133.4

94.2

00.0

00.0

502.5


71.8

125.6

12.3

00.0

884.4


143.6

62.8

24.6

00.0

854.2


161.2

51.3

20.9

24.6

19.2

261.3


133.4

52.3

24.6

00.0

844.2


554.1

112.8

41.9

24.6

00.0

723.6


20.5

41.9

12.3

00.0

130.6


20.5

41.9

12.3

00.0

130.6

Trisomy 13 161.2

41.0

20.9

00.0

00.0

221.1

Trisomy 18 382.8

112.8

62.8

00.0

00.0

552.7


15139.1

16376.4

2864.5

546.1

118659.3


38661.

21325.

4344.

1084.

200066.


19584.

10753.

2222.

542.

102552.




ArkansasTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)ArkansasTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


8.09158.2

23811.9

Trisomy 13 191.0

31.9

221.1

Trisomy 18 301.6

2516.0

552.7


15636.

200066.


Notes1.The case definition for patent ductus arteriosus changed starting with 2009 births.

General comments-A locally modified 6-digit BPA/CDC coding system is used for coding birth defects.-Livebirth data for 2010 births are provisional.



CaliforniaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)CaliforniaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)


DefectWhiteNon-Hispanic

BlackNon-Hispanic Hispanic

Asian or PacificIslanderNon-Hispanic

AmericanIndian orAlaska NativeNon-Hispanic Total** Notes


<5.

190.9

<5.

<5.

361.0

Anencephalus 131.5

<5.

612.9

<5.

00.0

992.9


<5.

130.6

<5.

00.0

240.7


<5.

733.5

84.9

<5.

952.8


<5.

231.1

<5.

00.0

381.1


2817.7

33315.9

2414.8

<5.

52815.3

1

Atrioventricular septal defect (endocardialcushion defect)

394.4

148.9

864.1

63.7

<5.

1524.4


<5.

90.4

<5.

<5.

210.6

Bladder exstrophy <5.

<5.

<5.

00.0

00.0

60.2

Choanal atresia <5.

00.0

50.2

00.0

00.0

80.2


<5.

2049.8

2012.3

<5.

3259.4


<5.

924.4

<5.

<5.

1414.1

2


63.8

813.9

<5.

<5.

1474.3

Common truncus <5.

<5.

60.3

00.0

00.0

80.2


<5.

201.0

<5.

00.0

351.0


<5.

512.4

53.1

<5.

832.4


2012.7

31815.2

<5.

<5.

48714.1


00.0

120.6

<5.

00.0

230.7

Encephalocele <5.

<5.

160.8

<5.

<5.

270.8


182.0

00.0

271.3

<5.

<5.

501.5

3

Fetus or newborn affected by maternalalcohol use

<5.

00.0

<5.

00.0

00.0

<5.

Gastroschisis 475.3

74.4

1095.2

127.4

00.0

1875.4


<5.

422.0

<5.

<5.

722.1


<5.

341.6

53.1

00.0

661.9

Hypospadias* 7115.6

810.0

807.5

<5.

<5.

1739.8

4

Omphalocele 70.8

<5.

201.0

<5.

00.0

361.0


95.7

1175.6

159.2

<5.

2086.0


<5.

301.4

<5.

<5.

451.3


<5.

753.6

116.8

<5.

1313.8

5


<5.

150.7

00.0

<5.

300.9


53.2

522.5

53.1

<5.

892.6


00.0

201.0

<5.

00.0

310.9

6



CaliforniaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







<5.

834.0

<5.

<5.

1414.1


<5.

612.9

53.1

00.0

972.8


91.0

00.0

341.6

<5.

<5.

461.3


<5.

291.4

<5.

00.0

501.5


161.8

<5.

291.4

<5.

00.0

501.5


00.0

130.6

<5.

00.0

200.6

Trisomy 13 91.0

<5.

190.9

<5.

00.0

391.1

Trisomy 18 202.3

<5.

572.7

<5.

00.0

1073.1


15778.

209068.

16240.

2667.

344413.


8005.

106240.

8322.

1371.

175758.

<5 indicates cell size suppressed to protect confidentiality and/or to indicate case count less than 5.*Hypospadias: prevalence per 10,000 male live births**Total includes unknown race



CaliforniaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)CaliforniaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Maternal Age (years)

Defect Less than 35 35+ Total** NotesDown syndrome (Trisomy 21) 249

8.122658.9

48714.1

Trisomy 13 230.8

112.9

391.1

Trisomy 18 501.6

4010.4

1073.1


38366.

344413.


Notes1.Atrial septal defect (ASD) cases are included if confirmed by physician review or echo or cath or surgery or autopsy; an ASD that is a component ofanother major heart malformation is not counted.2.Submucous cleft and bifid uvula are not included in this report.3.Isolated tracheoesophageal fistula is not included in this report.4.Hypospadias case counts include only 2nd and 3rd degree.5.Anal stenosis is not included in this report.6.Unilateral renal agenesis/hypoplasia is not included in this report.

General comments-Cases with chromosomal defects other than trisomy 13, 18 and 21 are not included in this report.-Cases with single gene disorders are not included in this report.-Stillbirth greater than or equal to 20 weeks is included for all defect types.-The criteria used to identify birth defects case counts have been refined from that used in previous years to reflect variations in data collectionascertainment rules for certain birth defects in some counties and birth years.



ColoradoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)ColoradoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 261.3

21.3

232.1

21.7

14.0

581.7

1

Aniridia 70.3

00.0

20.2

00.0

00.0

90.3


31.9

211.9

00.0

00.0

561.6


63.9

464.3

32.6

14.0

1053.0


42.6

333.1

00.0

14.0

1153.3


229147.9

1171108.6

128109.6

25100.6

3692106.5


844.1

127.8

383.5

54.3

28.0

1444.2

2


21.3

100.9

00.0

00.0

391.1


00.0

30.3

00.0

14.0

110.3


63.9

191.8

10.9

14.0

702.0


117.1

14813.7

76.0

312.1

40711.7


117.1

847.8

43.4

14.0

2838.2


138.4

989.1

32.6

14.0

3129.0

Common truncus 140.7

10.6

111.0

00.0

14.0

290.8


21.3

242.2

10.9

00.0

631.8


95.8

14713.6

1412.0

28.0

47113.6


74.5

312.9

43.4

00.0

1243.6


3019.4

16915.7

1714.6

14.0

71520.6


00.0

70.6

32.6

00.0

300.9

Encephalocele 150.7

42.6

141.3

10.9

00.0

381.1

Epispadias 211.0

31.9

90.8

00.0

00.0

331.0


864.2

63.9

312.9

21.7

14.0

1293.7

Gastroschisis 723.5

53.2

686.3

21.7

14.0

1544.4

3


512.5

42.6

201.9

10.9

00.0

772.2


2012.9

10810.0

76.0

312.1

2798.1


53.2

302.8

00.0

00.0

882.5


108136.4

39170.6

5288.1

15119.5

2083117.2


2012.9

12311.4

43.4

416.1

3129.0


6542.0

43840.6

5345.4

936.2

142641.2

Omphalocele 381.8

53.2

211.9

10.9

00.0

772.2

4


9460.7

46042.7

4740.3

1144.2

147642.6

5


1610.3

958.8

86.9

14.0

2707.8



ColoradoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







74.5

272.5

32.6

00.0

722.1


149.0

18817.4

32.6

624.1

48714.1


74.5

817.5

43.4

312.1

2136.1


21.3

70.6

21.7

14.0

521.5


31.9

312.9

10.9

14.0

1002.9


106.5

514.7

21.7

14.0

1835.3


31.9

434.0

21.7

28.0

1223.5

6


85.2

383.5

86.9

00.0

1343.9


130.6

10.6

242.2

00.0

00.0

381.1


53.2

373.4

32.6

14.0

1173.4


462.2

31.9

201.9

21.7

00.0

752.2


42.6

222.0

10.9

00.0

531.5

7

Trisomy 13 221.1

10.6

141.3

10.9

14.0

892.6

Trisomy 18 351.7

31.9

333.1

54.3

00.0

1644.7


8152.3

54450.4

4538.5

1456.3

162947.0

8


15479.

107852.

11676.

2486.

346517.


7919.

55352.

5903.

1255.

177794.




ColoradoTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)ColoradoTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)


Defect Less than 35 35+ Total NotesDown syndrome (Trisomy 21) 317

10.937467.8

71520.6

Trisomy 13 471.6

376.7

892.6

Trisomy 18 732.5

8315.1

1644.7


55140.

346517.


Notes1.Anencephalus: live births and fetal deaths any gestational age2.Atrioventricular septal defect:Cannot include Inlet VSD3.Gastroschisis: medical record review4.Omphalocele: medical record review5.Patent ductus arteriosus: birth weight greater than or equal to 2500 grams6.Spina bifidia without anencephalus: live birth and fetal deaths any gestational age7.Tricuspid valve atresia and stenosis:Tricuspid stenosis and hypoplasia included8.Ventricular septal defects: includes probable cases

General comments-CDPHE (Colorado Department of Public Health and Environment) disclaims responsibility for any analysis, interpretations, or conclusions.-Contact State Program directly in regards to fetal alcohol syndrome-Medicaid added as a data source starting with the 2009 data year.-Reports of criticial congenital heart categories have been confirmed/invalidated for this time period



DelawareBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)DelawareBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 10.5

22.1

23.7

00.0

00.0

51.4

Anencephalus 21.0

11.0

35.6

00.0

00.0

72.0

Aniridia 10.5

00.0

11.9

00.0

00.0

20.6


00.0

00.0

16.4

00.0

30.8


22.1

713.0

00.0

00.0

185.0


00.0

00.0

16.4

00.0

92.5

1


2222.9

1629.7

00.0

00.0

8624.0

2


147.3

33.1

23.7

00.0

00.0

195.3


11.0

00.0

00.0

00.0

20.6


00.0

00.0

00.0

00.0

20.6


44.2

47.4

212.7

00.0

298.1


44.2

47.4

212.7

00.0

267.3

3


33.1

00.0

00.0

00.0

82.2

Common truncus 10.5

00.0

00.0

00.0

00.0

10.3


11.0

47.4

16.4

00.0

123.4


55.2

916.7

425.4

00.0

8222.9


00.0

23.7

16.4

00.0

61.7


77.3

47.4

425.4

00.0

4312.0

4


11.0

00.0

00.0

00.0

41.1

Encephalocele 21.0

22.1

00.0

00.0

00.0

41.1

Epispadias 10.5

00.0

00.0

00.0

00.0

20.6


31.6

11.0

23.7

00.0

00.0

61.7


10.5

00.0

00.0

00.0

00.0

10.3

Gastroschisis 147.3

44.2

47.4

00.0

00.0

226.1


42.1

11.0

23.7

00.0

00.0

72.0


11.0

11.9

16.4

00.0

123.4

5


44.2

611.1

00.0

00.0

154.2

Hypospadias* 8586.8

4388.3

725.8

673.3

1434.8

14579.4

Microcephalus 84.2

1212.5

23.7

425.4

1200.0

308.4

6


5456.2

3972.3

22139.9

00.0

31788.5

7

Omphalocele 10.5

44.2

00.0

00.0

00.0

51.4


1717.7

611.1

00.0

00.0

4111.4

8



DelawareBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







1717.7

23.7

16.4

00.0

5014.0

9


33.1

916.7

212.7

00.0

4011.2


22.1

23.7

00.0

00.0

154.2


33.1

00.0

00.0

00.0

30.8


00.0

00.0

00.0

00.0

51.4


66.2

611.1

16.4

00.0

267.3


44.2

11.9

00.0

00.0

113.1

11


22.1

23.7

319.1

00.0

174.7

12


31.6

11.0

00.0

00.0

00.0

41.1


33.1

47.4

00.0

00.0

133.6


44.2

00.0

00.0

00.0

41.1

1

Trisomy 13 10.5

00.0

00.0

00.0

00.0

10.3

4

Trisomy 18 42.1

33.1

23.7

16.4

00.0

102.8

4


6567.6

4583.4

1063.6

1200.0

28078.2

15


9616.

5396.

1572.

50.

35819.


4872.

2718.

818.

23.

18253.




DelawareTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)DelawareTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.41938.5

4312.0

4

Trisomy 13 00.0

12.0

10.3

4

Trisomy 18 51.6

510.1

102.8

4


4929.

35819.


Notes1.Trivial or limited are not included.2.Atrial septal fenestrations are reported as an atrial septal defect (ASD). ASDs that self-close (not present after a month) are considered Patent ForamenOvales (PFO). PFOs are not counted.3.Pierre Robin sequence defects are included as a cleft palate.4.All chromosomal defects require a cytogenetics report.5.Benign external hydrocephalus or hydrocephalus due to a secondary cause are not included.6.Head circumference must be less than the 5th percentile.7.All obstructive and non-obstructive genitourinary defects (i.e., all hydronephrosis and other types of kidney dilation) are included as well as all resolveddefects that were confirmed postnatally.8.The newborn must weigh 2500 grams or greater and the PDA must be present at one month of age.9.Peripheral, branch, trivial, or limited are not included.10.Delaware did not perform CCHD screening in 2007, 2008, and 2009; Peripheral, branch, trivial, or limited are not included.11.Spina bifida occulta is not included.12.A ventricular septal defect with an overriding aorta is counted as Tetralogy of Fallot.13.Delaware did not perform CCHD screening in 2007, 2008, and 2009.

General comments-2007 Maternal Fetal Medicine (MFM) cases were derived from cytogenetic lists and fetal therapy lists. 2008 MFM cases were derived from all possibledefect cases handled by MFM. 2009 MFM cases were derived from cytogenetic lists only.-All defects found prenatally must be confirmed postnatally or through cytogenetic testing.-All heart defects require an echocardiogram report.-Coding system used was CDC/BPA.-Fetal deaths (including terminations) are included if the fetus weighed 350 grams or higher; in the absence of weight at least 20 weeks gestation orgreater.-Registry does not distinguish spontaneous terminations from elective terminations. Stillbirths, miscarriages, and terminations are all currently reportedtogether.-Registry was not collecting data in 2006. Registry data from 2010 is currently being vetted.



FloridaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)FloridaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 300.6

160.6

120.4

00.0

00.0

620.5

1

Aniridia 20.0

30.1

10.0

00.0

00.0

60.1


241.0

230.7

10.3

00.0

960.8


50.2

321.0

31.0

14.5

790.7


210.9

341.0

41.3

14.5

1631.4


2004.0

1194.8

1053.2

175.5

00.0

4524.0

2


441.8

230.7

31.0

14.5

1141.0


90.4

80.2

00.0

00.0

320.3


271.1

441.3

51.6

00.0

1661.5


1235.0

2176.6

278.7

14.5

8567.5


1214.9

1594.9

196.2

00.0

6455.7


1355.5

1925.9

154.9

313.5

7676.7


150.6

210.6

31.0

00.0

950.8


371.5

290.9

20.6

00.0

1441.3


984.0

2768.4

289.1

417.9

9027.9


903.6

832.5

61.9

00.0

3643.2


31412.7

42312.9

4514.6

417.9

148313.0

1


140.6

140.4

20.6

14.5

700.6

Encephalocele 350.7

331.3

280.9

20.6

00.0

1000.9

Epispadias 811.6

230.9

250.8

10.3

00.0

1331.2


1202.4

481.9

722.2

20.6

00.0

2472.2

Gastroschisis 3106.1

702.8

1113.4

72.3

00.0

5044.4

3


1412.8

994.0

662.0

41.3

00.0

3162.8


28111.4

1915.8

196.2

14.5

8107.1


933.8

802.4

41.3

00.0

3553.1


80864.2

79047.1

8050.2

325.8

397168.2


2198.9

1895.8

123.9

313.5

7246.4


73429.7

143843.9

10935.3

522.4

430137.8

Omphalocele 250.5

190.8

100.3

10.3

00.0

570.5

4


32213.0

2918.9

206.5

313.5

113710.0


471.9

431.3

51.6

00.0

1751.5


40316.3

77723.7

165.2

14.5

306627.0



FloridaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







1214.9

1193.6

113.6

14.5

4854.3


471.9

471.4

41.3

00.0

1791.6


572.3

521.6

41.3

00.0

2492.2


1054.3

1233.8

103.2

14.5

4914.3


642.6

962.9

51.6

00.0

3142.8

1


1235.0

1123.4

196.2

14.5

5404.7


400.8

311.3

250.8

61.9

00.0

1030.9


1094.4

1334.1

82.6

00.0

5034.4


1452.9

391.6

702.1

00.0

00.0

2612.3


291.2

300.9

10.3

00.0

1251.1

2

Trisomy 13 420.8

321.3

230.7

00.0

00.0

1000.9

1

Trisomy 18 801.6

672.7

591.8

61.9

00.0

2171.9

1


128352.0

198560.6

14747.6

835.9

639456.2

2


246756.

327639.

30885.

2230.

1137228.


125827.

167780.

15931.

1163.

582127.




FloridaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)FloridaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)


Defect 35 35+ Total NotesDown syndrome (Trisomy 21) 782

8.170142.1

148313.0

1

Trisomy 13 660.7

342.0

1000.9

1

Trisomy 18 1281.3

895.3

2171.9

1


166443.

1137228.


Notes1.Florida reports live births only2.Includes probable cases3.Cases of Gastroschisis were differentiated from Omphalocele by using 54.71 procedure code in 2006-2009 and the 756.73 ICD-9-CM code in 20104.Reported for 2009 and 2010 only using the ICD-9-CM code 756.72

General comments-Atrial Septal Defect, Fetus or newborn affected by maternal alcohol use and patent ductus arteriosus are not reported



GeorgiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)GeorgiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 60.8

252.4

40.6

21.2

00.0

371.4

Anencephalus 162.1

302.9

182.9

21.2

00.0

742.8

Aniridia 10.1

30.3

10.2

00.0

00.0

70.3


121.2

101.6

21.2

00.0

311.2


131.3

142.2

00.0

00.0

381.4


161.6

61.0

10.6

00.0

461.7


19519.0

12820.3

148.6

00.0

53219.9


435.7

868.4

304.8

21.2

139.1

1786.6


121.2

20.3

00.0

00.0

190.7


20.2

00.0

00.0

00.0

40.1


101.0

00.0

10.6

00.0

200.7


898.7

599.4

84.9

6234.4

2449.1


494.8

406.3

53.1

278.1

1385.2


434.2

264.1

31.8

00.0

1274.7


171.7

40.6

10.6

00.0

341.3


171.7

91.4

21.2

00.0

441.6


252.4

497.8

21.2

139.1

1726.4


232.2

223.5

21.2

139.1

803.0


16516.1

12720.2

2515.4

278.1

53520.0


30.3

71.1

10.6

00.0

160.6

Encephalocele 00.0

131.3

40.6

53.1

139.1

291.1

Epispadias 40.5

60.6

10.2

00.0

00.0

110.4


283.7

201.9

71.1

00.0

00.0

582.2


50.7

30.3

10.2

00.0

00.0

90.3

Gastroschisis 293.9

504.9

284.4

53.1

00.0

1204.5


101.3

333.2

30.5

00.0

139.1

501.9


12011.7

396.2

116.8

3117.2

28110.5


161.6

101.6

31.8

00.0

552.1


32862.7

8024.8

2327.4

2146.0

79858.2

Microcephalus 263.5

737.1

294.6

31.8

139.1

1395.2


35034.1

27844.1

3420.9

12468.8

118844.4

Omphalocele 192.5

343.3

152.4

10.6

139.1

782.9



GeorgiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







24724.0

16325.9

1710.5

6234.4

72727.2

1


757.3

386.0

95.5

139.1

1836.8


201.9

142.2

10.6

00.0

552.1


595.7

9515.1

53.1

00.0

29210.9


333.2

375.9

95.5

00.0

1134.2


242.3

121.9

00.0

00.0

542.0


353.4

152.4

10.6

00.0

732.7


605.8

264.1

31.8

139.1

1495.6


353.4

294.6

42.5

00.0

1174.4


515.0

132.1

74.3

00.0

1244.6


70.9

101.0

101.6

21.2

00.0

311.2


383.7

152.4

21.2

00.0

913.4


324.3

302.9

121.9

21.2

00.0

782.9


232.2

81.3

21.2

00.0

542.0


181.8

40.6

10.6

00.0

311.2

Trisomy 13 131.7

242.3

30.5

00.0

00.0

451.7

Trisomy 18 476.3

333.2

172.7

106.2

139.1

1314.9


43742.5

34654.9

4024.6

6234.4

142153.1


102735.

63007.

16259.

256.

267700.


52299.

32280.

8402.

137.

137034.




GeorgiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)GeorgiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



11.825951.0

53520.0

Trisomy 13 281.3

173.3

451.7

Trisomy 18 401.8

8917.5

1314.9


50765.

267700.


Notes1.Cases included if gestational age at birth was greater than or equal to 36 weeks and PDA was last noted at >=6 weeks of age; or if gestational age at birthwas greater than or equal to 36 weeks and PDA noted at < 6wks of age was treated or if another heart defect was present

General comments-All totals include definite, probable/possible, and prenatal diagnoses-All totals include live births and stillbirths greater than or equal to 20 weeks, elective terminations at any gestational age, and prenatal diagnoses withundocumented outcome at any gestational age.-Georgia uses CDC/BPA codes-NCHS bridged race data were not available. Multiple-race individuals are included in the totals only.



IllinoisBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)IllinoisBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







191.3

90.4

30.6

00.0

851.0

Anencephalus 671.5

241.6

311.5

51.1

00.0

1271.5

Aniridia 10.0

00.0

10.0

00.0

00.0

20.0


120.8

201.0

81.7

00.0

1001.1


90.6

381.8

81.7

00.0

1241.4


80.5

40.2

20.4

00.0

871.0


45029.7

24811.9

7315.7

216.2

207423.8


2655.8

835.5

422.0

40.9

00.0

3994.6


30.2

10.0

00.0

00.0

130.1


20.1

10.0

00.0

00.0

220.3


151.0

100.5

40.9

00.0

871.0


895.9

854.1

367.7

216.2

7248.3


463.0

502.4

204.3

00.0

4224.8


332.2

361.7

51.1

00.0

2472.8


90.6

20.1

10.2

00.0

370.4


181.2

70.3

10.2

00.0

670.8


120.8

201.0

112.4

00.0

2522.9


392.6

160.8

102.1

00.0

1962.3


1499.8

1657.9

398.4

18.1

112112.9


30.2

70.3

00.0

00.0

410.5

Encephalocele 280.6

181.2

150.7

20.4

00.0

630.7

Epispadias 761.7

201.3

50.2

00.0

00.0

1011.2


1322.9

231.5

201.0

71.5

00.0

1842.1


90.2

70.5

10.0

00.0

00.0

170.2


644.2

472.3

51.1

00.0

3494.0


501.1

211.4

100.5

40.9

00.0

851.0


18011.9

834.0

265.6

00.0

6377.3


312.0

170.8

71.5

00.0

1611.8


38049.4

1059.9

8435.1

115.5

220749.6


1258.2

482.3

81.7

00.0

3924.5


35423.4

24211.6

13328.6

18.1

236127.1

Omphalocele 891.9

291.9

190.9

30.6

00.0

1401.6



IllinoisBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







34923.0

23011.0

7015.0

18.1

186621.4

1


523.4

211.0

71.5

00.0

2112.4


110.7

50.2

10.2

00.0

410.5


60.4

40.2

00.0

00.0

400.5


593.9

351.7

204.3

00.0

3043.5


201.3

100.5

51.1

00.0

1161.3


593.9

261.2

71.5

00.0

2693.1


553.6

452.2

163.4

00.0

3714.3


271.8

331.6

153.2

00.0

2342.7


513.4

321.5

194.1

00.0

2673.1


260.6

90.6

160.8

40.9

00.0

550.6


251.6

271.3

91.9

00.0

1671.9


241.6

160.8

51.1

18.1

1131.3

Trisomy 13 701.5

191.3

120.6

40.9

00.0

1061.2

Trisomy 18 1092.4

352.3

361.7

112.4

00.0

1922.2


48732.1

37818.1

11624.9

324.4

330438.0


151591.

208756.

46530.

1232.

870570.


76975.

106106.

23899.

647.

444716.




IllinoisTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)IllinoisTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.555941.3

112112.9

Trisomy 13 701.0

322.4

1061.2

Trisomy 18 841.1

896.6

1922.2


135477.

870570.


Notes1.Only includes cases where the birth weight >=2500g

General comments-2010 birth (denominator) data are provisional.-Illinois is under court order that limits the data that can be collected about a termination. The birth defect registry is therefore unable to obtain birthdefect information from terminations.-In 2009, Illinois reduced the number of charts that were reviewed for birth defects, dropping primarily children with very low-birth weights and noreported associated birth defects



IndianaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)IndianaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 70.2

20.4

10.3

11.0

00.0

110.3

Aniridia 100.3

30.5

10.3

00.0

00.0

140.3


20.4

20.5

22.1

00.0

300.7


30.5

20.5

00.0

00.0

390.9


40.7

41.0

11.0

00.0

571.3


24142.8

14437.3

4445.4

451.3

189143.8

1


1314.1

183.2

92.3

33.1

112.8

1663.8

2


81.4

30.8

11.0

00.0

290.7


10.2

10.3

00.0

00.0

180.4


20.4

51.3

11.0

00.0

621.4


274.8

3910.1

1111.3

112.8

3838.9


295.2

143.6

66.2

00.0

2776.4


193.4

236.0

55.2

112.8

2586.0


10.2

10.3

00.0

00.0

210.5


71.2

10.3

11.0

00.0

320.7


142.5

266.7

88.2

00.0

3047.0


162.8

153.9

22.1

00.0

1212.8


376.6

5313.7

1515.5

112.8

51511.9


10.2

10.3

11.0

00.0

260.6

Encephalocele 240.8

10.2

41.0

11.0

00.0

300.7

Epispadias 331.0

71.2

10.3

22.1

00.0

431.0

3


822.6

81.4

143.6

11.0

112.8

1062.5


1033.2

254.4

71.8

1616.5

00.0

1543.6


223.9

215.4

22.1

00.0

1964.5

4


632.0

132.3

133.4

11.0

00.0

932.2


437.6

164.1

66.2

112.8

2215.1


122.1

82.1

22.1

112.8

791.8


12242.9

5025.4

1427.9

126.9

136561.8

3


5910.5

369.3

1818.6

225.6

4289.9


11620.6

8421.8

2020.6

225.6

105624.5

Omphalocele 210.7

61.1

10.3

11.0

00.0

290.7

4


19134.0

8321.5

2626.8

676.9

99423.0

5



IndianaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







458.0

225.7

66.2

112.8

3177.3


8014.2

10527.2

77.2

564.1

112826.2


203.6

184.7

55.2

112.8

1894.4


112.0

82.1

11.0

00.0

521.2


122.1

123.1

00.0

00.0

1162.7


101.8

133.4

22.1

00.0

1383.2


142.5

184.7

11.0

00.0

1894.4


142.5

123.1

22.1

00.0

1192.8


250.8

50.9

41.0

00.0

00.0

350.8


183.2

133.4

00.0

00.0

1944.5

6


50.9

41.0

00.0

00.0

340.8

7

Trisomy 13 140.4

40.7

51.3

00.0

00.0

230.5

Trisomy 18 371.2

91.6

51.3

11.0

00.0

531.2


13724.4

14938.6

4041.2

112.8

168839.1

8


56253.

38559.

9700.

780.

431306.


28470.

19664.

5017.

372.

220710.




IndianaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)IndianaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.821746.8

51511.9

Trisomy 13 170.4

61.3

230.5

Trisomy 18 310.8

214.5

531.2


46415.

431306.


Notes1.Large increase in the number of probable cases of Atrial Septal Defect and Patent Ductus Arteriosus for 2010; believed to stem from an increasedawareness of congenital heart defects among physicians statewide, and a large increase in the number of echocardiograms ordered at less than 6 weeks ofage, with no follow-up echo performed after 6 weeks to invalidate/confirm.2.Atrioventricular septal defect: Data does not distinguish BPA code 745.487 (2006-2010).3.Prior to July 2009, all children reported with either hypospadias or epispadias were reviewed for a combined disorder of 'hypospadias/epispadias.' Sincethat time our system was modified and children are currently reviewed for hypospadius and epispadias separately.4.Indiana utilizes BPA codes to differentiate gastroschisis from omphalocele.5.Data reported for children who were gestational age greater than or equal to 36 weeks at birth and whose PDA was last noted at greater than or equal to 6weeks of age (2006-2010); Unable to exclude infants of less than 2500 grams birth weight. Large increase in the number of probable cases of AtrialSeptal Defect and Patent Ductus Arteriosus for 2010; believed to stem from an increased awareness of congenital heart defects among physiciansstatewide, and a large increase in the number of echocardiograms ordered at less than 6 weeks of age, with no follow-up echo performed after 6 weeks toinvalidate/confirm.6.Transposition of great arteries: Data includes entire coding range of 745.10 - 745.19 (2006-2010).7.Tricuspid valve atresia and stenosis: Data does not distinguish BPA codes 746.105 or 746.106 (2006-2010).8.Ventricular septal defect: Data does not distinguish BPA code 745.487 (2006-2010); Probable cases included.9.&c9

General comments-Birth defects rates based on fewer than 20 cases are unstable.-Case ascertainment in Indiana is a combination of passive ascertainment by electronic submission of hospital discharge information and activeascertainment through chart auditing of 45 targeted conditions identified through hospital discharge ICD-9-CM codes.-Data includes children whose conditions were classified with a status of either 'confirmed' or 'probable' based on the abstracted information.-Indiana does not collect or report information on stillbirths or terminations. Data reported is based on livebirths (2006-2010).-Report based on data as of 05/24/2013. As additional information is constantly entering the system, updated data for birth years 2007-2010 will besubmitted, along with 2011 data, in the next report.



IowaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)IowaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







44.8

42.5

00.0

00.0

261.3

Anencephalus 472.8

33.6

74.3

24.1

00.0

613.1


44.8

74.3

24.1

110.1

462.3


11.2

95.5

00.0

00.0

432.2


22.4

10.6

36.2

220.1

643.2


3542.0

4326.3

816.5

880.6

60030.0


1116.6

89.6

138.0

36.2

00.0

1356.8


22.4

00.0

00.0

00.0

90.5


00.0

00.0

00.0

00.0

40.2


11.2

21.2

12.1

00.0

381.9


1113.2

1811.0

510.3

220.1

20510.3


22.4

106.1

48.2

110.1

1507.5


33.6

84.9

12.1

110.1

1085.4

Common truncus 80.5

00.0

00.0

12.1

00.0

90.5


11.2

53.1

36.2

110.1

552.8


33.6

95.5

510.3

00.0

1045.2


11.2

10.6

00.0

00.0

221.1


89.6

3823.3

1020.6

00.0

29915.0


00.0

10.6

12.1

00.0

191.0

Encephalocele 191.1

00.0

10.6

00.0

00.0

211.1

Epispadias 80.5

00.0

00.0

00.0

00.0

80.4


372.2

00.0

31.8

24.1

00.0

422.1


60.4

00.0

00.0

00.0

00.0

70.4

Gastroschisis 774.6

67.2

138.0

36.2

330.2

1025.1

1


291.7

22.4

31.8

00.0

110.1

351.8


1113.2

1911.6

714.4

00.0

23411.7


22.4

53.1

12.1

00.0

512.6


1944.5

2226.5

728.6

119.5

50849.7


1416.8

2112.9

510.3

110.1

22511.3


1821.6

5231.9

1530.9

220.1

57929.0

Omphalocele 462.7

33.6

21.2

12.1

00.0

532.7

1


2226.4

5433.1

1428.9

440.3

54527.3

2



IowaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







910.8

116.7

714.4

220.1

23811.9


11.2

00.0

12.1

00.0

211.1


1416.8

4024.5

12.1

440.3

48924.5


67.2

127.4

36.2

00.0

995.0


56.0

31.8

36.2

00.0

422.1


910.8

116.7

24.1

00.0

904.5


56.0

116.7

48.2

00.0

1427.1


78.4

148.6

12.1

110.1

934.7


22.4

63.7

12.1

110.1

723.6


221.3

00.0

42.5

00.0

110.1

271.4


22.4

31.8

36.2

00.0

663.3


492.9

11.2

31.8

36.2

00.0

562.8


11.2

42.5

00.0

220.1

512.6


00.0

21.2

00.0

110.1

170.9

Trisomy 13 241.4

11.2

42.5

12.1

00.0

331.7

Trisomy 18 533.2

67.2

84.9

12.1

00.0

693.5


3845.6

8753.3

2347.4

880.6

109854.9

3


8326.

16325.

4851.

993.

199824.


4271.

8306.

2444.

514.

102277.




IowaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)IowaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


9.113562.9

29915.0

Trisomy 13 241.3

94.2

331.7

Trisomy 18 402.2

2913.5

693.5


21459.

199824.


Notes1.Use BPA codes to distinguish omphalocele and gastroschisis2.Included only if weight greater than or equal to 2500 grams. Did not exclude if gestational less than 36 weeks and was not able to determine if defectslast noted greater than or equal to 6 weeks of age3.Probable cases are not included.



KansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)KansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 50.4

00.0

20.6

00.0

00.0

70.4

Anencephalus 302.1

32.2

154.6

11.8

18.6

502.5


00.0

00.0

00.0

00.0

30.2


00.0

61.8

00.0

00.0

80.4


00.0

10.3

00.0

00.0

30.2


2719.5

8726.5

58.8

18.6

68434.3


100.7

10.7

30.9

00.0

00.0

170.9


00.0

10.3

00.0

00.0

30.2


00.0

00.0

00.0

00.0

30.2


00.0

10.3

00.0

00.0

100.5


53.6

309.1

35.3

18.6

1819.1


42.9

226.7

23.5

217.2

964.8


00.0

30.9

00.0

00.0

201.0

Common truncus 10.1

00.0

00.0

00.0

00.0

40.2


00.0

10.3

00.0

00.0

30.2


00.0

41.2

00.0

00.0

381.9


10.7

72.1

11.8

00.0

261.3


64.3

3611.0

58.8

00.0

20310.2


00.0

10.3

00.0

00.0

30.2

Encephalocele 50.4

00.0

20.6

00.0

00.0

80.4

Epispadias 00.0

10.7

20.6

00.0

00.0

30.2


90.6

00.0

30.9

00.0

00.0

180.9


40.3

00.0

00.0

00.0

00.0

70.4

Gastroschisis 614.3

42.9

92.7

11.8

00.0

995.0


50.4

00.0

41.2

00.0

00.0

180.9


53.6

92.7

00.0

00.0

753.8


00.0

51.5

11.8

00.0

221.1


1420.0

2112.6

26.7

117.2

24423.9

Microcephalus 40.3

21.4

92.7

00.0

00.0

271.4


64.3

3410.4

58.8

00.0

1929.6



KansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Omphalocele 241.7

21.4

41.2

23.5

00.0

371.9


107.2

4012.2

11.8

18.6

1336.7

1


32.2

30.9

00.0

00.0

381.9


10.7

195.8

00.0

18.6

1196.0


21.4

82.4

23.5

00.0

281.4


00.0

10.3

11.8

00.0

211.1


10.7

51.5

11.8

00.0

221.1


21.4

51.5

00.0

00.0

261.3


21.4

123.7

00.0

00.0

643.2


00.0

41.2

00.0

00.0

201.0


10.1

00.0

00.0

00.0

00.0

40.2


10.7

61.8

00.0

00.0

321.6


10.7

20.6

00.0

00.0

40.2

Trisomy 13 40.3

00.0

20.6

23.5

00.0

130.7

Trisomy 18 141.0

10.7

92.7

00.0

00.0

261.3


64.3

5617.1

11.8

18.6

27113.6


13881.

32825.

5709.

1164.

199493.


7017.

16730.

2973.

580.

101955.




KansasTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)KansasTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.37636.2

20310.2

Trisomy 13 60.3

31.4

130.7

Trisomy 18 130.7

125.7

261.3


20991.

199493.


Notes1.Includes only birth weight >=2500g or gestational age >=36 weeks; unable to select defect last noted at >=6 wks of age.

General comments-A passive system; all are probable cases; Includes in-state resident births only.-Aniridia had zero cases reported-Kansas does not formally provide CCHD screening. No data is available for pulmonary valve atresia, dextro-Transposition of great arteries (d-TGA) orTricuspid valve atresia.



KentuckyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)KentuckyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 401.7

41.5

53.5

00.0

00.0

501.8

Aniridia 20.1

00.0

00.0

00.0

00.0

20.1


31.2

00.0

00.0

00.0

130.5


10.4

32.1

12.6

00.0

130.5


31.2

10.7

12.6

00.0

361.3


848326.1

191132.7

48122.8

5148.4

5040177.3

1


612.6

83.1

32.1

12.6

00.0

752.6


10.4

21.4

00.0

00.0

130.5


00.0

00.0

00.0

00.0

50.2


20.8

10.7

00.0

00.0

291.0


197.3

139.0

12.6

00.0

28410.0


72.7

10.7

25.1

00.0

1174.1


115.3

43.5

13.3

00.0

1345.9


10.5

10.9

00.0

00.0

150.7


10.4

21.4

00.0

00.0

180.6


62.3

53.5

12.6

00.0

1645.8


73.4

10.9

00.0

00.0

713.1


2810.8

1711.8

410.2

129.7

30310.7


00.0

00.0

00.0

00.0

140.5

Encephalocele 150.6

10.4

00.0

00.0

00.0

170.6

Epispadias 161.1

32.0

00.0

00.0

00.0

191.1


461.9

51.9

32.1

12.6

00.0

572.0


190.8

155.8

21.4

12.6

129.7

471.7

Gastroschisis 833.5

51.9

64.2

00.0

00.0

1033.6


451.9

114.2

10.7

37.7

00.0

632.2


93.5

32.1

12.6

129.7

1334.7


83.1

42.8

00.0

00.0

772.7


10881.7

2737.0

524.8

158.1

109275.0

Microcephalus 652.7

145.4

32.1

00.0

00.0

832.9


4015.4

3222.2

717.9

00.0

54319.1

Omphalocele 251.1

62.3

21.4

00.0

00.0

351.2


354136.1

9767.4

1538.4

389.0

222078.1



KentuckyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







197.3

74.9

25.1

00.0

2027.1


36.4

13.6

00.0

00.0

376.8


4115.8

1611.1

37.7

129.7

80628.4


166.2

53.5

37.7

00.0

1575.5


20.8

21.4

00.0

00.0

411.4


31.2

10.7

12.6

129.7

441.5


103.8

53.5

12.6

00.0

1234.3


93.5

21.4

00.0

00.0

1003.5


114.2

21.4

12.6

00.0

983.4


91.0

11.0

11.7

00.0

00.0

111.0


93.5

53.5

12.6

00.0

1103.9


51.1

12.1

00.0

00.0

00.0

71.3


31.2

10.7

00.0

00.0

291.0


12.1

00.0

00.0

00.0

71.3

Trisomy 13 180.8

20.8

32.1

00.0

00.0

250.9

Trisomy 18 401.7

10.4

32.1

00.0

00.0

451.6


12548.1

6142.4

1435.8

129.7

122042.9

1


26004.

14398.

3910.

337.

284258.


13226.

7295.

2020.

172.

145540.




KentuckyTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)KentuckyTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


6.413147.9

30310.7

Trisomy 13 210.8

31.1

250.9

Trisomy 18 130.5

207.3

451.6


27360.

284258.


Notes1.Probable cases are included



LouisianaBirth Defects Counts and Prevalence 2006-2008 (Prevalence per 10,000 Live Births)LouisianaBirth Defects Counts and Prevalence 2006-2008 (Prevalence per 10,000 Live Births)






Amniotic bands 81.1

61.1

<5.

00.0

00.0

151.1

Anencephalus 60.8

81.5

00.0

00.0

00.0

141.0

Aniridia 00.0

<5.

00.0

00.0

00.0

<5.

1


<5.

00.0

00.0

00.0

120.9


00.0

<5.

00.0

00.0

110.8


91.6

00.0

<5.

00.0

272.0


32459.2

3651.5

1663.4

585.0

83361.2


537.5

254.6

<5.

519.8

00.0

856.2


81.5

<5.

<5.

00.0

211.5

Bladder exstrophy <5.

<5.

00.0

00.0

<5.

80.6


61.1

<5.

00.0

00.0

221.6


366.6

1115.7

<5.

<5.

1098.0


305.5

68.6

<5.

00.0

1007.3


244.4

<5.

<5.

00.0

594.3


<5.

00.0

<5.

00.0

161.2


81.5

<5.

00.0

00.0

201.5


193.5

<5.

<5.

<5.

805.9


101.8

57.2

00.0

00.0

352.6


549.9

912.9

831.7

<5.

17813.1


50.9

<5.

00.0

00.0

131.0

Encephalocele 50.7

81.5

<5.

00.0

00.0

141.0

Epispadias 101.4

71.3

00.0

00.0

00.0

171.2


162.3

101.8

<5.

<5.

00.0

292.1


91.3

132.4

<5.

00.0

<5.

241.8

Gastroschisis 476.6

213.8

00.0

00.0

00.0

685.0


202.8

213.8

<5.

00.0

00.0

423.1


356.4

57.2

<5.

<5.

765.6


101.8

<5.

00.0

<5.

241.8


16157.8

925.3

<5.

<5.

45966.0

Microcephalus 567.9

8816.1

57.2

<5.

00.0

15111.1


12322.5

1622.9

<5.

<5.

34825.6

Omphalocele 91.3

152.7

<5.

00.0

<5.

261.9



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LouisianaBirth Defects Counts and Prevalence 2006-2008 (Prevalence per 10,000 Live Births)







17532.0

1825.8

831.7

<5.

49536.3

2


468.4

<5.

<5.

00.0

1128.2


50.9

00.0

00.0

00.0

171.2


366.6

1014.3

<5.

<5.

16312.0


234.2

<5.

<5.

<5.

624.6


122.2

<5.

00.0

00.0

241.8


152.7

<5.

00.0

00.0

322.3


285.1

<5.

00.0

00.0

674.9


112.0

<5.

<5.

00.0

402.9


213.8

<5.

00.0

00.0

544.0


152.7

<5.

<5.

<5.

503.7


294.1

142.6

<5.

<5.

<5.

463.4

Tricuspid valve atresia and stenosis <5.

81.5

<5.

<5.

00.0

131.0

Tricuspid valve atresia <5.

61.1

<5.

<5.

00.0

110.8

Trisomy 13 <5.

<5.

<5.

00.0

00.0

90.7

Trisomy 18 152.1

50.9

<5.

<5.

00.0

241.8


24144.0

3042.9

1143.6

<5.

72453.2


54755.

6989.

2525.

588.

136201.


27854.

3563.

1299.

284.

69506.




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LouisianaTrisomy Counts and Prevalence by Maternal Age 2006-2008 (Prevalence per 10,000 Live Births)LouisianaTrisomy Counts and Prevalence by Maternal Age 2006-2008 (Prevalence per 10,000 Live Births)


Defect Less than 35 years old 35 years old or older Total NotesDown syndrome (Trisomy 21) 99

8.07961.1

17813.1

Trisomy 13 70.6

<5.

90.7

Trisomy 18 161.3

86.2

241.8


12932.

136201.


Notes1.Aniridia only reported for 20082.Includes only if weight =>2500 grams or gestational age >=36 wks, however, unable to define if defect lasted at >= 6 wks of age

General comments-2006 birth defects data include only live births to Louisiana residents at birth that occurred in Greater New Orleans, Baton Rouge, Lake Charles andShreveport areas.-2007 birth defects data include only live births to Louisiana residents at birth that occurred in Greater New Orleans, Baton Rouge, Lafayette, LakeCharles, Mandeville, and Shreveport areas-2008 birth defects data are provisional and include only live births to Louisiana residents that occurred in Greater New Orleans, Baton Rouge, Lafayette,Lake Charles, Mandeville, and Shreveport-2009 birth defects data are not provided because most of records have not been reviewed-All probable cases are included-CDC/BPA codes are used to define the birth defects-Louisiana is an active surveillance state that began identifying births in 2005. Birth defects surveillance has not been conducted among terminations andstillbirths yet



MaineBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MaineBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 81.3

00.0

00.0

00.0

00.0

91.4


00.0

00.0

19.0

117.8

538.0


00.0

00.0

00.0

00.0

446.6


00.0

00.0

00.0

00.0

304.5

Common truncus 71.1

00.0

00.0

00.0

00.0

71.1


15.8

329.3

00.0

117.8

8112.2

Encephalocele 20.3

00.0

19.8

00.0

00.0

30.5

Gastroschisis 396.3

00.0

00.0

218.1

00.0

416.2

1


00.0

19.8

00.0

00.0

213.2


586.1

264.3

130.6

154.3

12562.5

2

Omphalocele 152.4

00.0

00.0

00.0

00.0

152.3

3


00.0

00.0

00.0

00.0

80.6


00.0

00.0

00.0

00.0

20.5

2


00.0

00.0

00.0

128.3

30.8

2


15.8

00.0

00.0

00.0

233.5


00.0

19.8

00.0

00.0

233.5

4


00.0

00.0

00.0

117.8

324.8


203.2

00.0

00.0

00.0

00.0

213.2


00.0

00.0

00.0

00.0

50.8


1724.

1024.

1108.

561.

66605.

Total Male Live Births (2008-2010) 18523.

581.

311.

327.

184.

19995.




MaineTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MaineTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



8.53234.8

8112.2


9183.

66605.


Notes1.Gastroschisis is coded 756.73. Cases are also abstracted to determine diagnosis2.Surveillance for this condition began with 2008 births3.Omphalocele is coded 756.72. Cases are also abstracted to determine diagnosis4.Includes pulmonary atresia with septal defect

General comments-Casefinding is limited to babies born in Maine to Maine residents.-Casefinding is limited to birth defects identified within the first year of life.



MarylandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MarylandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 20.3

20.4

10.5

00.0

00.0

50.3

Anencephalus 593.4

211.6

91.8

20.8

00.0

1002.6


70.5

10.2

00.0

00.0

100.3


40.3

71.4

20.8

00.0

220.6


00.0

10.3

00.0

00.0

40.2


262.0

81.6

10.4

00.0

621.6


211.5

181.7

30.7

00.0

00.0

421.4


20.4

00.0

00.0

00.0

20.1


10.1

00.0

00.0

00.0

120.3


20.2

40.8

00.0

00.0

70.2


574.5

5110.0

145.4

00.0

2867.5


252.0

91.8

31.2

00.0

1233.2


60.6

00.0

21.0

00.0

200.6

Common truncus 10.1

10.2

00.0

00.0

00.0

20.1


00.0

00.0

00.0

00.0

30.1


50.4

71.4

10.4

00.0

451.2


141.1

61.2

20.8

00.0

501.3


1128.8

458.8

2610.0

112.3

40110.5


00.0

00.0

00.0

00.0

70.2

Encephalocele 100.6

50.4

10.2

00.0

00.0

170.4

Epispadias 50.4

10.1

20.5

10.5

00.0

90.3


311.8

201.6

71.4

10.4

00.0

611.6

Gastroschisis 965.5

645.0

224.3

72.7

00.0

1965.1

1


40.4

30.4

00.0

00.0

00.0

70.3


463.6

112.2

51.9

00.0

1353.5


80.8

00.0

41.9

00.0

331.1


24638.1

5119.6

2921.5

0.

78140.1

Microcephalus 50.3

80.6

61.2

10.4

00.0

200.5


40.4

00.0

10.5

00.0

170.6


161.3

40.8

10.4

00.0

381.0


50.6

00.0

21.3

00.0

120.5


10.2

00.0

00.0

00.0

40.3



MarylandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

00.0

10.1


231.8

40.8

31.2

00.0

591.5


272.1

51.0

10.4

00.0

671.8


332.6

142.7

31.2

00.0

882.3


352.7

40.8

62.3

00.0

982.6


252.0

132.6

51.9

00.0

1092.9


191.5

10.2

51.9

00.0

461.2


141.1

61.2

51.9

00.0

431.1


70.5

50.5

41.0

10.5

00.0

180.6


10.2

00.0

11.0

00.0

50.3


10.2

00.0

11.0

00.0

50.3

Trisomy 13 211.2

131.0

30.6

20.8

00.0

401.0

Trisomy 18 593.4

211.6

152.9

62.3

00.0

1082.8


292.8

61.4

52.5

00.0

762.5


127596.

50963.

25957.

815.

381537.


64557.

26052.

13464.

.

.194978.




MarylandTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MarylandTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


6.120929.9

40110.5

Trisomy 13 210.7

192.7

401.0

Trisomy 18 481.5

598.4

1082.8


70003.

381537.


Notes1.The data reported for gastroschisis is from ICD9 code 756.79 (Abdominal Wall Defect).

General comments-Age cutoff for stillbirths and terminations is 20 weeks.-All data is based on hospital reporting through a passive collection system. Data obtained from Vital Statistics does not provide specific diagnosis forvalidation.-Data for CCHD is based on hospital reporting and can not be validated through Vital Statistics as there is no requirement to specify the cardiac defect onthe birth certificate.-Male births for American Indian or Alaska Native not available separate from total.-Maryland Vital Statistics do not have a separate race category for Other/Unknown and because HISPANIC category includes all births to mothers ofHispanic origin of any race, this leads to totals not adding up to the total number of births. For 2009 and 2010 the racial categories added up to more thanthe total number of births so 'Others/Unknowns' could be identified. For 2006 through 2008 we categorized the difference as 'Other/Unknown'.-The total number of births data was received from Vital Statistics. HISPANIC category includes all births to mothers of Hispanic origin of any race.-Total male live births indicates total live male births in the state of Maryland which includes races categorized as 'other' or American Indian or AlaskaNative.



MassachusettsBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MassachusettsBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







72.1

81.5

00.0

00.0

371.0

Anencephalus 110.4

20.6

40.7

20.7

00.0

210.6

Aniridia 20.1

00.0

10.2

10.3

00.0

40.1


113.3

122.2

20.7

00.0

501.3


30.9

142.6

103.5

00.0

691.8


72.1

71.3

10.3

00.0

611.6


8024.0

9818.1

5218.0

338.4

74919.7


1325.2

236.9

163.0

62.1

00.0

1834.8


10.3

40.7

51.7

112.8

230.6


00.0

10.2

00.0

00.0

50.1

1


10.3

50.9

00.0

00.0

300.8


195.7

397.2

258.6

00.0

3038.0


61.8

305.6

72.4

00.0

2025.3


113.3

213.9

51.7

112.8

1604.2


10.3

20.4

00.0

112.8

170.4


133.9

183.3

20.7

00.0

962.5


92.7

101.9

51.7

112.8

1002.6


5315.9

7513.9

289.7

338.4

48612.8


10.3

30.6

00.0

00.0

150.4

Encephalocele 40.2

00.0

30.6

00.0

00.0

80.2


672.6

61.8

112.0

20.7

112.8

882.3

Gastroschisis 702.7

164.8

336.1

51.7

00.0

1323.5


481.9

30.9

132.4

93.1

112.8

762.0


247.2

244.4

31.0

00.0

1223.2


51.5

91.7

10.3

00.0

591.6


5129.9

3813.7

2315.4

125.4

49025.1

2

Microcephalus 421.6

92.7

122.2

20.7

112.8

661.7

3


4814.4

10218.9

4314.9

00.0

59015.5

Omphalocele 281.1

92.7

81.5

10.3

00.0

471.2


4914.7

7013.0

3411.7

225.6

50213.2

4


3711.1

448.1

175.9

00.0

2757.2


20.6

40.7

10.3

00.0

220.6



MassachusettsBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







92.7

203.7

93.1

112.8

1273.3


51.5

163.0

20.7

00.0

531.4


51.5

254.6

51.7

00.0

1102.9


51.5

20.4

00.0

00.0

140.4

5


72.1

142.6

31.0

00.0

772.0


206.0

295.4

165.5

00.0

1664.4


200.8

20.6

50.9

72.4

00.0

340.9


92.7

132.4

41.4

112.8

1193.1


763.0

72.1

132.4

41.4

112.8

1052.8


30.9

20.4

10.3

00.0

260.7


20.6

20.4

10.3

00.0

240.6

Trisomy 13 180.7

30.9

50.9

00.0

00.0

260.7

Trisomy 18 291.1

113.3

152.8

41.4

00.0

621.6


6920.7

11320.9

6020.7

00.0

75419.8

6


33308.

54035.

28942.

781.

380407.


17075.

27669.

14951.

393.

194980.




MassachusettsTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MassachusettsTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.426830.9

48612.8

Trisomy 13 130.4

131.5

260.7

Trisomy 18 321.1

303.5

621.6


86826.

380407.


Notes1.Excludes isolated diagnosis without surgical intervention and secondary diagnosis without postnatal confirmation.2.Excludes 1st degree and not otherwise specified.3.Defined as head circumference 2 standard deviations below normal.4.Weight <=2500 gms is excluded. We have fairly stringent criteria for coding Patent Ductus Arteriosus.5.Excludes isolated unilateral renal agenesis/hypoplasia.6.Excludes isolated muscular Ventricular Septal Defects.

General comments-2010 data are provisional.-Coding system is CDC/BPA.-Differences in numbers from previous publications are the result of updated files.-Possible/probable cases are excluded.-Pyloric stenosis, congenital hip dislocation, epispadias, and Fetus or newborn affected by maternal alcohol use are not collected.-Source for race and Hispanic ethnicity is vital records.-Stillbirths are included, terminations are not included.



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MichiganBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MichiganBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 611.4

121.1

71.6

20.9

13.5

891.5

Aniridia 110.3

20.2

00.0

00.0

00.0

130.2


201.8

40.9

31.4

00.0

881.5


121.1

40.9

31.4

00.0

711.2


131.2

81.8

73.3

00.0

1322.2


1226111.9

23052.0

13262.0

2691.3

532987.9


2425.7

595.4

132.9

104.7

00.0

3365.5


161.5

20.5

52.3

00.0

651.1


00.0

00.0

00.0

13.5

150.2


181.6

10.2

20.9

00.0

921.5


635.7

265.9

209.4

27.0

62510.3


403.6

143.2

115.2

310.5

3676.1


595.4

235.2

125.6

414.0

3916.4


252.3

20.5

31.4

00.0

861.4

1


151.4

30.7

31.4

27.0

1171.9


605.5

225.0

2210.3

27.0

66411.0


302.7

102.3

62.8

13.5

2073.4


13612.4

398.8

3114.6

310.5

82113.5


80.7

20.5

31.4

00.0

440.7

Encephalocele 380.9

100.9

30.7

00.0

00.0

510.8

Epispadias 310.7

100.9

00.0

00.0

00.0

410.7


1162.7

171.6

40.9

62.8

00.0

1472.4


300.7

171.6

00.0

10.5

00.0

490.8

Gastroschisis 111.4

73.3

11.2

00.0

00.0

191.7

2


1152.7

464.2

40.9

41.9

13.5

1742.9


12911.8

184.1

178.0

621.1

5639.3


575.2

71.6

83.8

13.5

2383.9

1


25445.5

4419.4

5045.3

1497.4

170054.8


12711.6

286.3

209.4

27.0

5739.4


15714.3

5913.3

3416.0

621.1

120319.8



MichiganBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Omphalocele 405.1

104.7

11.2

12.0

00.0

534.6

2


45141.2

9822.2

4420.7

1138.6

182130.0


16415.0

245.4

209.4

310.5

64810.7

1


413.7

71.6

62.8

27.0

1522.5

1


777.0

6113.8

125.6

621.1

96515.9


474.3

132.9

115.2

27.0

2844.7


242.2

61.4

20.9

27.0

1151.9


292.6

81.8

20.9

27.0

1572.6


676.1

163.6

136.1

310.5

3245.3


262.4

163.6

115.2

13.5

2904.8


716.5

122.7

104.7

13.5

3425.6

1


421.0

201.8

51.1

52.3

27.0

761.3

1


544.9

81.8

146.6

517.6

3345.5

1


1593.8

302.7

40.9

62.8

310.5

2093.4

1


181.6

20.5

20.9

13.5

821.4

1


181.6

20.5

20.9

13.5

821.4

1

Trisomy 13 370.9

121.1

30.7

20.9

00.0

570.9

Trisomy 18 862.0

333.0

51.1

31.4

00.0

1322.2


44240.3

11225.3

7635.7

1035.1

247940.9


109592.

44243.

21279.

2848.

606386.


55811.

22695.

11030.

1437.

310432.




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MichiganTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MichiganTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



8.933241.7

82113.5

Trisomy 13 440.8

101.3

570.9

Trisomy 18 801.5

486.0

1322.2


79711.

606386.


Notes1.Live births only.2.Not collected until 2010.



MinnesotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MinnesotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 20.3

10.5

42.9

42.6

16.6

121.0

Aniridia 00.0

00.0

00.0

10.7

00.0

10.1


20.9

21.4

00.0

00.0

90.8


10.5

32.1

32.0

00.0

131.1


20.9

10.7

00.0

00.0

100.8


4721.2

2618.6

2516.5

16.6

20517.1


294.6

146.3

64.3

64.0

16.6

605.0


00.0

00.0

10.7

00.0

70.6


00.0

00.0

00.0

00.0

10.1


31.4

32.1

00.0

00.0

131.1


167.2

1611.5

1610.5

533.2

1159.6


73.2

128.6

64.0

16.6

705.8


115.0

53.6

64.0

16.6

625.2

Common truncus 20.3

10.5

10.7

00.0

00.0

60.5


10.5

10.7

10.7

00.0

110.9


125.4

117.9

10.7

16.6

524.3


10.5

64.3

53.3

00.0

332.8


4520.3

2517.9

159.9

319.9

18315.3


20.9

10.7

00.0

00.0

50.4

Encephalocele 10.2

20.9

00.0

00.0

00.0

30.3

Epispadias 61.0

10.5

00.0

00.0

00.0

70.6


193.0

52.3

32.1

21.3

00.0

302.5

Gastroschisis 193.0

73.2

85.7

106.6

16.6

463.8


91.4

41.8

32.1

32.0

00.0

201.7


83.6

64.3

10.7

16.6

322.7


31.4

42.9

00.0

00.0

252.1


6355.8

1825.6

1215.3

227.4

30449.8

Microcephalus 132.1

219.5

1410.0

117.2

00.0

615.1


4520.3

3726.5

2617.1

16.6

25421.2

Omphalocele 81.3

52.3

32.1

00.0

00.0

181.5


5323.9

3122.2

1912.5

16.6

21317.8


167.2

117.9

106.6

213.3

766.3



MinnesotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







41.8

10.7

21.3

16.6

131.1


229.9

2215.8

42.6

853.2

19316.1


83.6

53.6

32.0

00.0

403.3


52.3

10.7

00.0

16.6

110.9


31.4

32.1

32.0

213.3

211.8


83.6

85.7

74.6

16.6

494.1


20.9

42.9

10.7

16.6

332.8


83.6

21.4

95.9

00.0

514.3


62.7

53.6

74.6

00.0

473.9


243.8

62.7

53.6

74.6

00.0

463.8


31.4

00.0

10.7

00.0

80.7

1

Trisomy 13 20.3

52.3

42.9

00.0

00.0

110.9

Trisomy 18 111.7

83.6

10.7

42.6

00.0

242.0


8538.4

6345.1

3321.7

639.9

39533.0


22137.

13956.

15186.

1505.

119785.


11299.

7040.

7859.

731.

61082.




MinnesotaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MinnesotaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.710749.6

18315.3

Trisomy 13 60.6

52.3

110.9

Trisomy 18 101.0

146.5

242.0


21564.

119785.


Notes1.746.100 only included in Minnesota surveillance

General comments-All data include confirmed cases only-All data is for live births only. Stillbirths and Terminations are not included.-Amniotic bands are not included in Minnesota surveillance-Data are for Hennepin and Ramsey Counties only-Minnesota uses BPA codes



MississippiBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MississippiBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 30.3

60.6

00.0

00.0

00.0

90.4

Aniridia 10.1

10.1

11.3

00.0

00.0

30.1


70.7

00.0

00.0

00.0

120.5


121.2

22.7

14.3

16.5

311.4


90.9

11.3

00.0

00.0

281.3


88590.0

2533.2

1459.8

34222.7

172978.5


302.7

434.4

34.0

312.8

00.0

813.7


70.7

11.3

00.0

00.0

140.6


10.1

00.0

00.0

00.0

40.2


10.1

00.0

00.0

16.5

40.2


575.8

56.6

521.4

16.5

1557.0


343.5

22.7

312.8

00.0

863.9


191.9

34.0

00.0

00.0

602.7

Common truncus 60.5

50.5

00.0

00.0

00.0

110.5


60.6

00.0

00.0

00.0

90.4


161.6

11.3

00.0

00.0

401.8


242.4

45.3

00.0

00.0

512.3


777.8

912.0

14.3

16.5

1948.8


60.6

11.3

00.0

00.0

150.7

Encephalocele 50.5

30.3

11.3

00.0

00.0

90.4

Epispadias 30.3

40.4

00.0

00.0

00.0

70.3


353.2

131.3

00.0

00.0

213.1

502.3


211.9

232.3

00.0

14.3

213.1

492.2

Gastroschisis 333.0

292.9

00.0

14.3

00.0

642.9

1


242.2

363.7

00.0

14.3

00.0

632.9


10110.3

34.0

00.0

213.1

2029.2


262.6

00.0

00.0

00.0

602.7


31863.5

410.5

433.2

225.9

56450.1


22122.5

22.7

28.5

532.7

35216.0


17818.1

68.0

417.1

16.5

39417.9


24925.3

1823.9

521.4

1385.1

52123.7

2


12112.3

34.0

312.8

16.5

22910.4



MississippiBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







697.0

56.6

28.5

16.5

26912.2


343.5

34.0

312.8

16.5

683.1


161.6

00.0

00.0

00.0

331.5


141.4

11.3

14.3

00.0

401.8


212.1

11.3

14.3

00.0

442.0


171.7

11.3

28.5

00.0

592.7


585.9

22.7

28.5

16.5

1305.9


434.4

34.0

417.1

16.5

924.2


252.5

11.3

28.5

00.0

462.1

Trisomy 13 60.5

90.9

00.0

14.3

00.0

160.7

Trisomy 18 161.5

131.3

22.7

00.0

00.0

321.5


39340.0

2634.6

625.6

1278.6

88440.1

3


98344.

7524.

2340.

1527.

220198.


50069.

3801.

1204.

773.

112546.




MississippiTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MississippiTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


6.56237.5

1948.8

Trisomy 13 150.7

10.6

160.7

Trisomy 18 231.1

95.4

321.5


16552.

220198.


Notes1.MSDH does not distinguish between gastrochisis and omphalocele. Both are counted as gastrochisis.2.Only cases with =>2500 grams birth weight are included.3.MSDH does not indicate probable causes.

General comments-Mississippi uses the ICD-9 coding system.



NebraskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)NebraskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 50.5

00.0

00.0

00.0

00.0

50.4

Anencephalus 292.9

22.3

94.4

00.0

00.0

403.0

Aniridia 10.1

11.1

00.0

00.0

00.0

20.1


00.0

10.5

13.2

00.0

110.8


11.1

146.9

13.2

00.0

312.3


11.1

21.0

00.0

14.8

302.2


2528.7

5024.5

619.2

419.0

36827.6


161.6

11.1

10.5

13.2

00.0

191.4


33.4

21.0

00.0

00.0

120.9


00.0

00.0

00.0

00.0

40.3


33.4

31.5

00.0

00.0

261.9


66.9

2512.3

516.0

628.5

15211.4


66.9

125.9

39.6

14.8

886.6


00.0

104.9

26.4

00.0

826.1

Common truncus 50.5

00.0

10.5

00.0

14.8

70.5


11.1

31.5

26.4

14.8

362.7


11.1

167.8

39.6

314.3

1088.1


22.3

73.4

00.0

14.8

332.5


1011.5

4220.6

516.0

14.8

22717.0

Ebstein's anomaly 70.7

00.0

21.0

00.0

00.0

90.7

Encephalocele 50.5

22.3

42.0

13.2

00.0

131.0

Epispadius 60.6

00.0

00.0

00.0

00.0

60.4


171.7

11.1

52.5

00.0

00.0

231.7


10.1

00.0

00.0

00.0

00.0

10.1

Gastroschisis 515.2

33.4

104.9

26.4

733.3

755.6

Hirschsprung's disease (congenitalmegacolon)

262.6

11.1

31.5

26.4

14.8

332.5


66.9

157.4

412.8

14.8

1017.6


00.0

62.9

00.0

00.0

453.4

Hypospadias 38676.4

2863.0

4038.2

849.3

218.1

47769.7

Microcephalus 686.9

1011.5

2311.3

26.4

314.3

1098.2


1314.9

3014.7

722.4

29.5

22416.8

Omphalocele 272.7

22.3

31.5

13.2

00.0

342.5


2023.0

4622.6

516.0

29.5

31823.8



NebraskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







66.9

62.9

00.0

14.8

836.2


00.0

21.0

00.0

14.8

161.2


22.3

2813.7

26.4

14.8

21316.0


44.6

115.4

39.6

14.8

634.7


22.3

00.0

13.2

00.0

211.6


22.3

83.9

13.2

00.0

413.1


22.3

115.4

13.2

00.0

614.6


78.0

83.9

13.2

00.0

715.3


11.1

42.0

00.0

14.8

352.6


60.6

00.0

62.9

00.0

00.0

120.9


22.3

62.9

00.0

00.0

463.4


363.7

22.3

62.9

00.0

00.0

453.4


22.3

10.5

00.0

14.8

131.0


22.3

10.5

00.0

14.8

131.0

Trisomy 13 141.4

22.3

52.5

00.0

00.0

221.6

Trisomy 18 313.1

55.7

52.5

00.0

14.8

433.2


2124.1

8240.2

825.6

419.0

54340.7


8713.

20395.

3130.

2102.

133497.


4444.

10483.

1623.

1107.

68423.




NebraskaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)NebraskaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


10.99864.1

22717.0

Trisomy 13 191.6

32.0

221.6

Trisomy 18 272.3

1610.5

433.2


15298.

133497.


General comments-Probable cases were not included.-Terminations are not a source for birth defects in Nebraska.



NevadaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)NevadaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 00.0

10.6

81.1

00.0

00.0

90.5


31.7

91.2

00.0

00.0

170.9


00.0

20.3

00.0

00.0

70.4


21.1

91.2

10.7

00.0

271.4


228130.0

62884.1

14695.5

1566.0

168186.7


222.7

31.7

273.6

00.0

00.0

542.8


10.6

30.4

42.6

00.0

110.6


00.0

30.4

00.0

00.0

40.2


10.6

111.5

00.0

00.0

221.1


116.3

7910.6

95.9

313.2

1789.2


52.9

324.3

32.0

00.0

753.9


84.6

496.6

85.2

14.4

1125.8

Common truncus 40.5

00.0

70.9

21.3

00.0

130.7


10.6

81.1

10.7

00.0

140.7


126.8

506.7

74.6

28.8

1367.0


31.7

182.4

32.0

00.0

532.7


2413.7

12516.7

1711.1

14.4

25813.3

1


00.0

81.1

10.7

00.0

170.9

Encephalocele 81.0

52.9

20.3

00.0

00.0

160.8

Epispadias 20.2

00.0

00.0

00.0

00.0

20.1


172.1

42.3

141.9

53.3

00.0

412.1


202.4

84.6

30.4

21.3

14.4

351.8


121.5

148.0

101.3

21.3

00.0

392.0


158.6

456.0

63.9

28.8

1055.4


52.9

162.1

21.3

00.0

382.0


3437.9

8121.3

1316.5

544.3

33233.5

Microcephalus 283.4

126.8

304.0

10.7

00.0

743.8


2212.5

20928.0

3824.9

626.4

53327.5


191108.9

55374.0

12883.7

1252.8

146275.4


2313.1

679.0

159.8

28.8

1759.0


21.1

101.3

53.3

00.0

241.2


148.0

11915.9

42.6

313.2

27514.2



NevadaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







42.3

293.9

85.2

00.0

673.5


21.1

111.5

00.0

00.0

201.0


31.7

172.3

00.0

14.4

382.0


74.0

263.5

95.9

00.0

743.8


105.7

152.0

10.7

00.0

361.9


84.6

375.0

42.6

28.8

985.1


40.5

00.0

50.7

21.3

00.0

110.6


63.4

344.6

10.7

14.4

804.1

2


172.1

31.7

121.6

00.0

14.4

361.9


42.3

81.1

10.7

14.4

221.1

3

Trisomy 13 50.6

10.6

50.7

00.0

00.0

120.6

1

Trisomy 18 91.1

10.6

192.5

21.3

00.0

321.7

1


6335.9

36849.3

4529.4

1044.0

84743.7

4


17534.

74710.

15289.

2272.

193902.


8980.

37944.

7886.

1129.

99138.




NevadaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)NevadaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.810840.7

25813.3

1

Trisomy 13 80.5

20.8

120.6

1

Trisomy 18 161.0

114.1

321.7

1


26557.

193902.


Notes1.Live births only.2.Transposition of the Great Arteries: we do not use the new CDC/BPA codes; information includes the entire range.3.Tricuspid Valve Atresia: do not use the new CDC/BPA codes so cases with 746.106 are included in this category.4.Ventricular septal defect: excluded if less than 2500 grams birth weight or less than 36 weeks gestation; we do not use the new CDC/BPAcodes - cannot distinguish BPA 745.487.

General comments-Data are reported for live births and Nevada resident births only.-Nevada uses ICD-9 Coding system.-Probable/possible diagnoses are excluded.-Still births and terminations not included (Nevada collects data on live births only)



New HampshireBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)New HampshireBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 30.5

00.0

00.0

00.0

00.0

40.6

Anencephalus 30.5

00.0

00.0

14.1

00.0

40.6

Aniridia 10.2

00.0

00.0

00.0

00.0

10.1


18.8

00.0

00.0

00.0

50.7


00.0

00.0

00.0

164.5

131.9


00.0

00.0

00.0

00.0

111.6


18.8

338.3

416.5

00.0

8111.8


132.1

18.8

00.0

14.1

00.0

223.2


00.0

00.0

00.0

00.0

20.3


00.0

112.8

00.0

00.0

10.1


00.0

00.0

00.0

00.0

20.3


00.0

112.8

28.2

00.0

547.9


00.0

00.0

14.1

164.5

456.6


00.0

00.0

00.0

00.0

263.8

Common truncus 30.5

00.0

00.0

00.0

00.0

40.6


18.8

00.0

00.0

00.0

101.5


00.0

225.5

00.0

00.0

426.1


18.8

00.0

520.6

00.0

202.9


18.8

112.8

312.4

164.5

7010.2


00.0

00.0

00.0

00.0

30.4

Encephalocele 30.5

00.0

00.0

00.0

00.0

50.7

Epispadias 20.3

00.0

00.0

00.0

00.0

20.3


111.8

00.0

00.0

00.0

00.0

142.0


20.3

00.0

00.0

00.0

00.0

20.3

Gastroschisis 121.9

00.0

112.8

00.0

00.0

152.2

1


71.1

00.0

225.5

00.0

00.0

101.5


00.0

00.0

00.0

00.0

101.5


18.8

112.8

00.0

164.5

131.9


350.8

5126.3

540.8

00.0

26475.2

Microcephalus 223.6

18.8

112.8

14.1

00.0

304.4


326.5

9114.8

520.6

00.0

19228.0

Omphalocele 71.1

00.0

112.8

00.0

00.0

91.3

1



New HampshireBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







217.7

00.0

14.1

00.0

324.7

2


326.5

112.8

14.1

00.0

476.9


00.0

338.3

28.2

164.5

16023.3


00.0

225.5

00.0

00.0

263.8


00.0

00.0

00.0

00.0

50.7


00.0

112.8

00.0

00.0

182.6


00.0

451.0

14.1

00.0

517.4


00.0

112.8

00.0

00.0

142.0


18.8

338.3

14.1

00.0

263.8


18.8

112.8

00.0

00.0

202.9


00.0

00.0

00.0

00.0

10.1

Trisomy 13 30.5

18.8

00.0

00.0

00.0

50.7

Trisomy 18 61.0

00.0

00.0

00.0

00.0

111.6


217.7

338.3

312.4

00.0

12918.8

3


1133.

784.

2427.

155.

68586.


590.

396.

1226.

74.

35113.




New HampshireTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)New HampshireTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



8.32117.6

7010.2

Trisomy 13 10.2

32.5

50.7

Trisomy 18 50.9

65.0

111.6


11913.

68586.


Notes1.ICD-9 code data and active medical record abstraction used for all gastroschisis and omphalocele cases. For gastroschisis and omphalocele, cases aredistinguished using active medical chart review.2.Includes weight greater than or equal to 2500 grams only.3.Probable cases not included.

General comments-Data for all birth conditions includes data ascertained during calendar years 2006 through 2010 for NH resident mothers.-Data for live births was obtained from the New Hampshire Department of State, Division of Vital Records Administration, Web Query Tool. Data mayvary from year to year due to the process of continuing acquisition of birth certificate information, particularly from NH residents that give birth out ofstate.-Data includes live births from birth to age 2 years, stillbirths and terminations.-Data is for confirmed cases only, following medical chart review and use of the NBDPN Guidelines.



New JerseyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)New JerseyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







91.1

181.3

00.0

00.0

380.7

1

Anencephalus 60.2

20.2

70.5

10.2

00.0

160.3

Aniridia 70.3

00.0

20.1

00.0

00.0

100.2


81.0

241.7

61.1

00.0

581.1


121.4

563.9

91.7

00.0

1192.2


60.7

141.0

10.2

00.0

541.0


41549.9

52336.6

13524.9

7112.2

172331.2

2


773.0

283.4

362.5

91.7

116.0

1552.8


81.0

110.8

40.7

00.0

310.6


10.1

30.2

00.0

00.0

60.1


172.0

271.9

20.4

00.0

821.5


414.9

1349.4

549.9

232.1

4408.0


384.6

1047.3

458.3

00.0

3406.2


253.0

523.6

112.0

116.0

1903.4

Common truncus 90.4

30.4

141.0

10.2

00.0

270.5


182.2

433.0

50.9

116.0

1061.9


212.5

614.3

275.0

116.0

2304.2


70.8

282.0

91.7

00.0

801.4


10212.3

20014.0

387.0

348.1

67212.2


50.6

141.0

10.2

00.0

360.7

Encephalocele 150.6

40.5

80.6

40.7

00.0

320.6

Epispadias 552.2

182.2

282.0

61.1

116.0

1122.0


642.5

151.8

322.2

61.1

00.0

1192.2


60.2

111.3

00.0

00.0

116.0

190.3

Gastroschisis 491.9

232.8

453.2

40.7

116.0

1242.2

3


491.9

232.8

241.7

81.5

00.0

1071.9


516.1

815.7

81.5

00.0

2153.9


141.7

302.1

20.4

00.0

861.6


31774.6

38653.0

17362.1

6184.6

228581.0


748.9

1319.2

336.1

00.0

3606.5


28634.4

58741.1

19836.5

580.1

229541.6

Omphalocele 200.8

212.5

141.0

40.7

00.0

601.1

3



New JerseyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







72587.1

97168.0

27951.4

580.1

354264.2


12014.4

1289.0

376.8

116.0

5449.9


131.6

141.0

30.6

00.0

510.9


667.9

25718.0

285.2

00.0

81114.7


212.5

533.7

193.5

116.0

1783.2


293.5

271.9

91.7

00.0

1222.2


323.8

503.5

122.2

00.0

1602.9


364.3

715.0

132.4

116.0

2714.9


253.0

543.8

71.3

116.0

1633.0


455.4

493.4

203.7

00.0

2033.7


160.6

91.1

161.1

10.2

00.0

420.8


354.2

433.0

152.8

00.0

1683.0


451.8

151.8

241.7

91.7

00.0

981.8


111.3

100.7

30.6

00.0

390.7

Trisomy 13 50.2

40.5

60.4

10.2

00.0

170.3

Trisomy 18 200.8

151.8

171.2

50.9

00.0

571.0


48057.7

91564.1

26448.6

7112.2

329959.8

4


83229.

142833.

54273.

624.

552040.


42504.

72837.

27845.

325.

282238.




New JerseyTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)New JerseyTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.435029.7

67212.2

Trisomy 13 100.2

70.6

170.3

Trisomy 18 270.6

302.5

571.0


117855.

552040.


Notes1.Used codes 658.80 and 762.80.2.ASD only, PFO coded separately.3.Gastroschisis coded 756.79, Omphalocele coded 756.78.4.Only confirmed cases included.

General comments-Hybrid system; Passive with audit, uses ICD9-CM; 2010 live birth file is not final and is missing about 3000 out-of-state births;New web-based systemimplemented on July 1, 2009 with reduced reporting of prematurity-related and minor diagnoses.-New Jersey collects live births only.



New YorkBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)New YorkBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







140.7

190.7

20.2

00.0

670.5

Anencephalus 200.3

80.4

160.6

20.2

00.0

470.4

1

Aniridia 100.2

20.1

50.2

10.1

00.0

180.1


211.1

461.7

171.4

00.0

1431.2


80.4

521.9

110.9

14.3

1341.1


211.1

481.7

121.0

00.0

2291.9


138069.6

128946.7

58446.5

834.8

549345.1


2564.3

1266.4

1083.9

463.7

14.3

5484.5


412.1

341.2

221.8

14.3

1441.2


20.1

00.0

10.1

00.0

210.2


371.9

491.8

90.7

00.0

2311.9


894.5

2107.6

766.1

313.0

8777.2


954.8

1364.9

735.8

14.3

6805.6


1095.5

1445.2

483.8

14.3

6475.3


201.0

110.4

80.6

00.0

710.6


542.7

531.9

161.3

00.0

2402.0

2


693.5

2609.4

836.6

00.0

10058.2


381.9

562.0

231.8

14.3

2792.3


26313.3

35712.9

927.3

14.3

148412.2


120.6

180.7

60.5

00.0

710.6

Encephalocele 430.7

201.0

200.7

100.8

00.0

950.8

Epispadias 1051.8

552.8

521.9

121.0

00.0

2281.9


1722.9

381.9

592.1

221.8

00.0

3022.5


260.4

271.4

150.5

00.0

00.0

700.6


462.3

772.8

80.6

417.4

2932.4

3


1712.9

834.2

501.8

231.8

00.0

3342.7


23511.9

2378.6

766.1

28.7

9958.2


522.6

722.6

211.7

313.0

3192.6


66966.2

66947.5

29245.0

871.0

461974.0

4


19910.0

2248.1

564.5

28.7

8196.7


62631.6

107438.9

60448.1

1147.8

483439.7

Omphalocele 701.2

321.6

301.1

151.2

313.0

1531.3



New YorkBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







101251.0

69725.3

39031.1

1356.5

401533.0


23011.6

2167.8

947.5

28.7

10308.5


251.3

331.2

131.0

00.0

1261.0


25012.6

74126.9

13010.4

939.1

265721.8


673.4

1344.9

504.0

14.3

5024.1


321.6

210.8

60.5

14.3

1171.0


412.1

612.2

121.0

14.3

2792.3


884.4

1073.9

413.3

28.7

5544.5


392.0

632.3

262.1

00.0

2722.2


1015.1

993.6

645.1

28.7

5824.8


571.0

231.2

421.5

131.0

00.0

1361.1


472.4

622.2

282.2

00.0

3202.6


1652.8

472.4

622.2

262.1

00.0

3092.5


412.1

421.5

181.4

00.0

1581.3


150.8

180.7

90.7

00.0

710.6

Trisomy 13 420.7

180.9

220.8

80.6

00.0

900.7

Trisomy 18 540.9

381.9

411.5

100.8

00.0

1461.2


82341.5

128346.5

50740.4

1252.1

553445.4


198275.

275951.

125493.

2302.

1218258.


101036.

140866.

64926.

1127.

624350.




New YorkTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)New YorkTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.377232.2

148412.2

Trisomy 13 630.6

271.1

900.7

Trisomy 18 650.7

813.4

1461.2


239476.

1218258.




North CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)North CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







241.6

131.3

42.0

44.6

1001.6

Anencephalus 862.4

281.9

373.6

63.0

44.6

1782.8

Aniridia 20.1

40.3

10.1

10.5

00.0

80.1


322.1

232.2

42.0

11.1

1151.8


151.0

353.4

52.5

66.9

1101.7


362.4

242.3

21.0

33.4

1582.5


85656.9

43341.7

6432.2

6574.3

296846.5


2266.4

966.4

615.9

94.5

78.0

4036.3


161.1

90.9

00.0

11.1

470.7


80.5

30.3

00.0

00.0

190.3


211.4

171.6

21.0

11.1

871.4


1046.9

928.9

178.6

1314.9

5749.0


573.8

504.8

178.6

78.0

3996.3


664.4

434.1

105.0

66.9

3245.1


140.9

90.9

21.0

11.1

560.9


291.9

80.8

31.5

11.1

791.2


322.1

292.8

73.5

33.4

1742.7


1439.5

14313.8

2613.1

1416.0

77112.1


90.6

90.9

63.0

00.0

570.9

Encephalocele 421.2

191.3

161.5

21.0

22.3

821.3

Epispadias 290.8

181.2

30.3

00.0

00.0

500.8


972.7

271.8

161.5

31.5

33.4

1462.3


634.2

454.3

63.0

66.9

2784.4


872.5

593.9

111.1

52.5

11.1

1632.6


18912.6

959.2

147.0

1011.4

66010.3


382.5

272.6

31.5

11.1

1622.5


41053.5

12122.8

4947.4

3476.6

183156.0


1016.7

474.5

94.5

33.4

3124.9


55136.6

37536.1

7236.2

3944.6

243038.1

Omphalocele 732.1

352.3

191.8

84.0

00.0

1352.1


55436.8

37836.4

5929.7

3641.2

222934.9


1459.6

838.0

126.0

78.0

5118.0



North CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







342.3

171.6

52.5

11.1

1021.6


916.0

19819.1

84.0

2326.3

105616.5


593.9

615.9

52.5

55.7

2794.4


312.1

191.8

31.5

44.6

1191.9


624.1

343.3

63.0

89.1

2373.7


1077.1

706.7

115.5

910.3

4457.0


432.9

595.7

84.0

22.3

2684.2


775.1

333.2

105.0

910.3

2874.5


391.1

151.0

191.8

52.5

22.3

801.3


372.5

302.9

84.0

44.6

1963.1


1042.9

342.3

242.3

63.0

33.4

1712.7


342.3

242.3

10.5

55.7

1262.0


312.1

212.0

10.5

44.6

1071.7

Trisomy 13 341.0

231.5

141.3

21.0

11.1

761.2

Trisomy 18 992.8

382.5

252.4

105.0

22.3

1812.8


61941.1

55953.8

6733.7

4450.3

279643.8


150454.

103812.

19865.

8745.

638377.


76589.

53047.

10331.

4439.

327062.




North CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)North CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.733741.2

77112.1

Trisomy 13 561.0

202.4

761.2

Trisomy 18 1001.8

799.7

1812.8


81703.

638377.




North DakotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)North DakotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 246.7

113.9

00.0

00.0

00.0

255.6


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

24.2

20.5


00.0

00.0

00.0

12.1

102.3


9124.8

00.0

00.0

84176.1

34277.0


61.7

00.0

00.0

00.0

48.4

112.5

1


00.0

00.0

00.0

12.1

30.7


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

00.0

30.7


00.0

00.0

00.0

1123.1

7015.8


113.9

00.0

00.0

714.7

6715.1


00.0

00.0

00.0

12.1

122.7

Common truncus 00.0

00.0

00.0

00.0

24.2

20.5


113.9

00.0

00.0

12.1

102.3


00.0

00.0

00.0

510.5

194.3


113.9

00.0

233.2

00.0

419.2


113.9

00.0

00.0

12.1

71.6

Encephalocele 10.3

00.0

00.0

00.0

12.1

20.5


185.0

113.9

00.0

00.0

12.1

204.5


10.3

00.0

00.0

00.0

24.2

30.7

Gastroschisis 215.9

227.7

00.0

116.6

1633.5

409.0

2


82.2

00.0

00.0

00.0

36.3

112.5


00.0

00.0

00.0

612.6

255.6


00.0

00.0

00.0

12.1

132.9

Hypospadias* 5328.9

248.1

00.0

140.8

519.4

6126.9

3

Microcephalus 133.6

00.0

00.0

00.0

12.1

153.4


00.0

00.0

00.0

00.0

40.9

Omphalocele 41.1

00.0

00.0

00.0

12.1

51.1

4


569.3

00.0

233.2

4696.4

22550.6

5


113.9

00.0

00.0

1429.4

6214.0

6


113.9

00.0

00.0

2041.9

10523.6


113.9

00.0

00.0

12.1

153.4



North DakotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

24.2

61.4


00.0

00.0

00.0

00.0

30.7


00.0

00.0

00.0

48.4

153.4


00.0

00.0

00.0

714.7

255.6


00.0

00.0

00.0

714.7

265.9


00.0

00.0

00.0

00.0

12.1

10.2


00.0

00.0

00.0

12.1

225.0


00.0

00.0

00.0

00.0

51.1

7

Trisomy 18 41.1

00.0

00.0

116.6

00.0

51.1

8


341.6

00.0

00.0

4288.1

18441.4

9


721.

1733.

602.

4770.

44427.


416.

762.

245.

2575.

22680.




North DakotaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)North DakotaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.31533.2

419.2

Trisomy 13 00.0

00.0

00.0

8

Trisomy 18 41.0

12.2

51.1

8


4520.

44427.


Notes1.State uses ICD-9 code 745.60. .61, .69 for confirmed diagnosis. We cannot distinguish 745.487 CDC/BPA codes.2.North Dakota Vital Statistics collects data using ICD-10 codes. Gastroschisis and Omphalocele cannot be distinguished.3.The state uses ICD-9 codes and cannot distinguish between epispadias & hypospadias unless reported.4.North Dakota Vital Statistics collects data using ICD-10 codes; Gastroschisis and Omphalocele cannot be distinguished. North Dakota Vital Statisticshas started collected data using ICD-10 codes for Omphalocele from 2008 onwards in the birth certificates.5.Infants less than 2500 grams birth weight are unable to be excluded.6.Only ICD-9 code 746.017.State uses ICD-9 code 746.1 for confirmed diagnosis. We cannot distinguish 746.105 and 746.106 CDC/BPA codes.8.North Dakota Vital Statistics implemented electronic registration of births starting in 2006. Underascertainment of confirmed trisomy cases aresuspected in the new electronic birth certificate.9.State uses ICD-9 code 745.4 for confirmed diagnosis. We cannot distinguish 745.487 and 745.498 CDC/BPA codes.

General comments-During the reporting period 2013, data from the Division of Medical Genetics at the University of North Dakota School of Medicine and HealthSciences were linked to the registry to enhance the reporting in the ND Birth Defects Monitoring System and includes data for births with defects forinfants born in the calendar year 2010 from the Division of Medical Genetics program.-Fetal Death or 'birth resulting in stillbirth' means death prior to the complete expulsion or extraction from its mother of a product of human conception,irrespective of the duration of pregnancy. The death is indicated by the fact that after such expulsion or extraction the fetus does not breathe or show anyevidence of life such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles. North Dakota does not requirereporting of this event before 20 weeks of gestation. Although collection is attempted, reporting is poor.-North Dakota Vital Statistics implemented electronic registration of births starting in 2006.-Statistical records of induced termination and spontaneous termination are filed. Defects are not recorded.-The North Dakota Birth Defects Monitoring System master registry is translated to ICD-9 using ICD-10 codes from fetal death, death and birthcertificates.



OhioBirth Defects Counts and Prevalence 2008 (Prevalence per 10,000 Live Births)OhioBirth Defects Counts and Prevalence 2008 (Prevalence per 10,000 Live Births)







145.6

57.3

39.6

00.0

1419.5

1


197.7

34.4

26.4

00.0

1187.9

1


2710.9

811.6

39.6

146.3

16511.1

2


31.2

34.4

00.0

00.0

463.1

3

Trisomy 13 100.9

20.8

00.0

00.0

00.0

120.8

2

Trisomy 18 151.3

83.2

00.0

00.0

00.0

231.5

2


24818.

6887.

3129.

216.

148592.


12532.

3482.

1605.

103.

75677.

**Total includes unknown race



OhioTrisomy Counts and Prevalence by Maternal Age 2008 (Prevalence per 10,000 Live Births)OhioTrisomy Counts and Prevalence by Maternal Age 2008 (Prevalence per 10,000 Live Births)



7.36939.6

16511.1

2

Trisomy 13 90.7

31.7

120.8

2

Trisomy 18 70.5

169.2

231.5

2


17407.

148592.


Notes1.Data pulled on July 14, 2011.2.Data pulled on August 23, 2011.3.Data pulled on July 5, 2011.

General comments-Data is only available for the year 2008.



OklahomaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)OklahomaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 90.5

31.2

10.3

11.6

20.7

160.6

Anencephalus 452.6

41.6

72.0

23.3

72.3

652.4

Aniridia 60.3

00.0

10.3

00.0

00.0

80.3


20.8

61.7

11.6

62.0

391.4


20.8

144.0

23.3

51.7

582.2


62.4

92.5

00.0

51.7

893.3


20382.6

17148.3

1728.0

25684.7

190370.7


885.1

156.1

102.8

00.0

155.0

1284.8


10.4

20.6

00.0

31.0

180.7


10.4

00.0

00.0

20.7

90.3


20.8

30.8

11.6

41.3

401.5


166.5

174.8

46.6

299.6

2148.0


197.7

308.5

69.9

4715.6

35813.3


156.1

144.0

23.3

175.6

1445.4


41.6

20.6

11.6

31.0

301.1


62.4

10.3

00.0

31.0

491.8


52.0

154.2

46.6

103.3

1124.2


62.4

133.7

23.3

82.6

1043.9


249.8

6718.9

69.9

3210.6

33212.3


00.0

20.6

00.0

20.7

170.6

Encephalocele 171.0

52.0

10.3

11.6

10.3

261.0

Epispadias 100.6

31.2

00.0

00.0

00.0

130.5


533.1

83.3

82.3

11.6

103.3

803.0


50.3

10.4

00.0

00.0

00.0

60.2


72.8

205.6

34.9

3310.9

1766.5


301.7

62.4

20.6

11.6

51.7

441.6


166.5

174.8

11.6

217.0

1716.4


20.8

41.1

11.6

93.0

602.2


4838.3

158.3

825.8

4932.0

53338.8


249.8

205.6

11.6

237.6

2037.5


8835.8

14240.1

2439.5

9531.4

112441.8

Omphalocele 442.6

83.3

72.0

00.0

62.0

652.4



OklahomaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







218.5

236.5

23.3

237.6

1977.3


31.2

30.8

00.0

31.0

261.0


4217.1

13137.0

813.2

13845.7

109040.5


176.9

215.9

34.9

165.3

1706.3


20.8

51.4

00.0

41.3

391.4


93.7

82.3

11.6

186.0

963.6


124.9

185.1

34.9

165.3

1535.7


62.4

123.4

00.0

93.0

1164.3


166.5

164.5

11.6

155.0

1314.9


221.3

41.6

51.4

00.0

93.0

401.5


83.3

72.0

11.6

113.6

893.3


573.3

83.3

61.7

11.6

113.6

833.1


31.2

51.4

00.0

20.7

311.2


31.2

30.8

00.0

10.3

220.8

Trisomy 13 201.2

41.6

20.6

00.0

51.7

311.2

Trisomy 18 372.1

93.7

20.6

11.6

72.3

562.1


14458.6

17850.3

2134.6

16153.3

148555.2


24580.

35414.

6075.

30211.

269052.


12524.

18005.

3095.

15336.

137367.




OklahomaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)OklahomaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.614363.5

33212.3

Trisomy 13 241.0

73.1

311.2

Trisomy 18 391.6

177.6

562.1


22513.

269052.


General comments-Oklahoma definition of stillbirth is baby born dead (without heart rate), at or after 20th gestational week; includes babies that died during labor.



Puerto RicoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)Puerto RicoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 0.

0.

934.1

0.

0.

934.1

Anophthalmia/microphthalmia 0.

0.

201.5

0.

0.

201.5

1

Anotia/microtia 0.

0.

342.6

0.

0.

342.6

1

Aortic valve stenosis 0.

0.

421.8

0.

0.

421.8

Atrial septal defect 0.

0.

50222.0

0.

0.

50222.0

2


0.

0.

1004.4

0.

0.

1004.4

3

Cleft lip with and without cleft palate 0.

0.

2099.2

0.

0.

2099.2

Cleft palate without cleft lip 0.

0.

1456.4

0.

0.

1456.4

Coarctation of aorta 0.

0.

24710.8

0.

0.

24710.8

Common truncus 0.

0.

130.6

0.

0.

130.6

Down syndrome (Trisomy 21) 0.

0.

32414.2

0.

0.

32414.2

Ebstein anomaly 0.

0.

210.9

0.

0.

210.9

Encephalocele 0.

0.

291.3

0.

0.

291.3

Epispadias 0.

0.

60.3

0.

0.

60.3

4

Gastroschisis 0.

0.

1165.1

0.

0.

1165.1

5

Hypoplastic left heart syndrome 0.

0.

502.2

0.

0.

502.2

Hypospadias* 0.

0.

30733.3

0.

0.

30733.3

4

Omphalocele 0.

0.

572.5

0.

0.

572.5

5

Patent ductus arteriosus 0.

0.

55124.1

0.

0.

55124.1

6

Pulmonary valve atresia and stenosis 0.

0.

23910.5

0.

0.

23910.5

Pulmonary valve atresia 0.

0.

221.0

0.

0.

221.0

Reduction deformity, lower limbs 0.

0.

361.6

0.

0.

361.6

Reduction deformity, upper limbs 0.

0.

813.5

0.

0.

813.5

Spina bifida without anencephalus 0.

0.

1094.8

0.

0.

1094.8

Tetralogy of Fallot 0.

0.

924.0

0.

0.

924.0


0.

0.

150.7

0.

0.

150.7

Transposition of great arteries - All 0.

0.

642.8

0.

0.

642.8


0.

0.

542.4

0.

0.

542.4

Tricuspid valve atresia and stenosis 0.

0.

291.3

0.

0.

291.3

7

Trisomy 13 0.

0.

301.3

0.

0.

301.3

Trisomy 18 0.

0.

833.6

0.

0.

833.6

Ventricular septal defect 0.

0.

55424.3

0.

0.

55424.3

8



Puerto RicoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







0.

228267.

0.

0.

228267.


0.

92279.

0.

0.

92279.




Puerto RicoTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)Puerto RicoTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


9.113470.4

32414.2

Trisomy 13 190.9

115.8

301.3

Trisomy 18 502.4

3317.3

833.6


19038.

228267.


Notes1.Data only available 2008-2010.2.Excludes PFO.3.Only includes AV Canal.4.Data only available 2007-2010.5.We used clinical diagnosis to distinguish the two conditions.6.Unable to exclude infants with defect last noted at less than 6 weeks of age.7.Excludes 746.106 and 746.105.8.Excludes probable cases. We can't distinguish inlet VSD from other VSD. However we exclude inlet/posterior type VSD in the presence of AV Canal.

General comments-Probable/possible diagnoses were not included.-The coding system used was ICD 9 CM.-We include stillbirths and terminations (no gestational age cut off) in our counts.



Rhode IslandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)Rhode IslandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 00.0

00.0

32.5

00.0

00.0

30.5

Anencephalus 30.8

00.0

00.0

00.0

00.0

30.5


12.0

10.8

00.0

00.0

30.5


00.0

43.4

00.0

118.6

61.0


12.0

00.0

00.0

00.0

50.9


2652.6

4537.8

415.8

355.9

19834.4


113.1

12.0

10.8

00.0

00.0

132.3


12.0

00.0

00.0

00.0

30.5


00.0

00.0

00.0

00.0

10.2


12.0

00.0

00.0

00.0

30.5


24.0

119.2

27.9

00.0

356.1


12.0

75.9

311.8

118.6

366.3


24.0

43.4

13.9

00.0

111.9

Common truncus 00.0

12.0

00.0

00.0

00.0

10.2


12.0

10.8

00.0

00.0

30.5


48.1

75.9

00.0

00.0

468.0


12.0

32.5

13.9

00.0

162.8


510.1

1613.4

27.9

00.0

8414.6


00.0

00.0

00.0

00.0

30.5

Encephalocele 10.3

00.0

00.0

00.0

00.0

10.2

Epispadias 82.2

12.0

00.0

00.0

00.0

91.6


92.5

12.0

43.4

00.0

00.0

152.6


51.4

48.1

43.4

00.0

00.0

152.6

Gastroschisis 113.1

48.1

86.7

13.9

00.0

244.2


20.6

00.0

32.5

00.0

00.0

61.0


48.1

54.2

27.9

118.6

295.0


12.0

10.8

27.9

00.0

81.4


2287.3

4675.0

432.3

136.8

22175.1

Microcephalus 113.1

24.0

43.4

311.8

00.0

203.5


2244.5

3731.0

727.6

118.6

17229.9

Omphalocele 61.7

24.0

32.5

00.0

00.0

111.9


2346.6

4436.9

727.6

237.2

19033.0

1



Rhode IslandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







36.1

108.4

13.9

118.6

356.1


00.0

21.7

00.0

118.6

91.6


36.1

54.2

00.0

118.6

274.7


48.1

54.2

13.9

00.0

223.8


00.0

32.5

00.0

00.0

101.7


00.0

10.8

00.0

00.0

91.6


12.0

10.8

00.0

00.0

61.0


12.0

54.2

00.0

00.0

152.6


24.0

65.0

00.0

00.0

193.3


10.3

00.0

32.5

00.0

00.0

40.7


12.0

43.4

27.9

00.0

173.0


41.1

12.0

32.5

13.9

00.0

91.6


00.0

10.8

00.0

118.6

20.3


00.0

10.8

00.0

118.6

20.3

Trisomy 13 20.6

24.0

32.5

13.9

00.0

101.7

Trisomy 18 113.1

12.0

43.4

00.0

00.0

193.3


1530.4

4840.3

1143.4

118.6

21036.5


4940.

11917.

2534.

537.

57518.


2521.

6134.

1238.

272.

29429.




Rhode IslandTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)Rhode IslandTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.44040.0

8414.6

Trisomy 13 40.8

55.0

101.7

Trisomy 18 81.7

99.0

193.3


9988.

57518.


Notes1.Excludes PDA less than 36 weeks of gestation.

General comments-Maternal race/ethnicity and age numbers for 2009 prenatally ascertained cases are not available.-Prenatally ascertained and post-newborn inpatient discharge cases were collected beginning in 2009.-Total live births by race has been revised for 2008-2009.



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South CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)South CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 331.9

212.1

144.8

00.0

00.0

702.3

Aniridia 30.2

20.2

00.0

00.0

00.0

50.2


40.4

10.3

00.0

00.0

120.4


60.6

00.0

12.0

00.0

130.4


60.6

51.7

12.0

00.0

260.8


15224.7

5328.7

723.6

00.0

44523.4

1


774.5

585.8

103.4

00.0

00.0

1474.7


70.7

00.0

00.0

00.0

130.4


20.2

00.0

00.0

00.0

20.1


60.6

31.0

00.0

00.0

220.7


575.7

289.6

815.9

216.2

2508.1


494.9

124.1

24.0

00.0

1434.6


333.3

103.4

24.0

00.0

1374.4


30.3

10.3

00.0

18.1

180.6


40.4

31.0

00.0

00.0

170.5


131.3

165.5

24.0

00.0

912.9


151.5

134.5

00.0

00.0

712.3


528.7

2112.4

412.8

00.0

18910.3

2


40.4

10.3

24.0

00.0

170.5

Encephalocele 181.1

101.0

93.1

24.0

00.0

391.3

Epispadias 41.2

10.5

00.0

00.0

00.0

50.8

3


100.6

70.7

20.7

00.0

00.0

190.6

Gastroschisis 241.4

70.7

51.7

12.0

00.0

381.2


251.5

141.4

10.3

00.0

00.0

401.3


626.2

186.2

36.0

00.0

1805.8


313.1

103.4

12.0

00.0

842.7

Microcephalus 462.7

555.5

227.6

36.0

00.0

1294.2


515.1

279.3

12.0

00.0

1946.3

Omphalocele 110.6

80.8

00.0

00.0

00.0

190.6


17929.0

5127.7

620.3

114.0

44123.2

4



South CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







636.3

186.2

12.0

18.1

1815.8


161.6

51.7

00.0

00.0

421.4


254.1

2010.8

13.4

114.0

1196.3

5


161.6

20.7

24.0

18.1

632.0


262.6

51.7

00.0

00.0

702.3


282.8

155.2

00.0

18.1

912.9


333.3

93.1

12.0

00.0

943.0


181.8

72.4

24.0

00.0

912.9


535.3

124.1

12.0

00.0

1314.2


383.8

82.8

12.0

18.1

1364.4


452.6

151.5

31.0

00.0

18.1

662.1


101.0

51.7

12.0

00.0

260.8

Trisomy 13 80.8

101.7

10.6

00.0

00.0

201.1

6

Trisomy 18 222.1

132.2

63.5

00.0

00.0

412.2

7


31931.8

14650.2

1325.8

216.2

102433.0


100370.

29088.

5038.

1237.

310007.


50658.

14931.

2520.

656.

157707.

**Total includes unknown race



South CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)South CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.18944.8

18910.3

2

Trisomy 13 161.0

42.0

201.1

6

Trisomy 18 221.3

199.6

412.2

7

Total Live Births (2008-2010) 163862.

19864.

183735.


Notes1.Atrial Septal Defect was dropped beginning in 2009. Prevalence reflects live birth data for the years 2006-20082.Down Syndrome was collected beginning in 2008. Prevalence reflects live birth data for the years 2008-20103.Epispadias data only available for 2010. Prevalence reflects live birth data for the year 20104.Patent Ductus Arteriosus was dropped beginning in 2009. Prevalence reflects live birth data for the years 2006-20085.Pyloric Stenosis was dropped beginning in 2009. Prevalence reflects live birth data for the years 2006-20086.Trisomy 13 was collected beginning in 2008. Prevalence reflects live birth data for the years 2008-20107.Trisomy 18 was collected beginning in 2008. Prevalence reflects live birth data for the years 2008-2010



TennesseeBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)TennesseeBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 281.0

80.9

71.8

11.2

00.0

451.1

Aniridia 70.2

00.0

10.3

00.0

00.0

80.2


151.7

30.8

11.2

00.0

461.1


30.3

71.8

11.2

00.0

300.7


30.3

71.8

00.0

00.0

791.9


1370157.5

33787.0

5061.2

115.6

4574109.5


1184.2

364.1

112.8

11.2

00.0

1664.0

1


50.6

51.3

33.7

00.0

330.8


40.5

00.0

00.0

00.0

210.5


91.0

41.0

00.0

115.6

711.7


576.6

359.0

11.2

231.2

45110.8


505.7

225.7

67.3

115.6

3317.9


515.9

328.3

11.2

00.0

2876.9


50.6

30.8

11.2

00.0

411.0


222.5

20.5

44.9

00.0

992.4


475.4

328.3

44.9

00.0

3388.1


394.5

174.4

56.1

00.0

1784.3


11613.3

6416.5

1012.2

00.0

58614.0


80.9

41.0

22.4

00.0

421.0

Encephalocele 361.3

111.3

102.6

00.0

00.0

571.4

Epispadias 471.7

121.4

30.8

00.0

00.0

621.5


772.7

151.7

123.1

00.0

00.0

1042.5


521.9

313.6

00.0

00.0

00.0

832.0


252.9

194.9

33.7

00.0

2375.7

2


772.7

434.9

61.5

00.0

115.6

1283.1


839.5

4010.3

44.9

00.0

3277.8


333.8

164.1

00.0

00.0

1543.7


466105.0

6934.9

2457.5

264.5

2254105.4


11012.6

5213.4

22.4

00.0

48611.6


18521.3

9624.8

3036.7

00.0

131431.4

Omphalocele 742.6

293.3

92.3

00.0

00.0

1122.7

3


71682.3

23560.7

3846.5

231.2

266363.7

4



TennesseeBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







9010.3

266.7

89.8

231.2

4059.7


161.8

71.8

22.4

00.0

711.7


22125.4

18547.8

1214.7

231.2

177242.4


475.4

256.5

11.2

115.6

2566.1


232.6

61.5

22.4

00.0

892.1


192.2

143.6

22.4

00.0

952.3


546.2

225.7

44.9

00.0

2255.4


263.0

235.9

33.7

00.0

1653.9


495.6

215.4

33.7

00.0

2586.2


475.4

246.2

44.9

00.0

2425.8

5


672.4

172.0

82.1

33.7

00.0

952.3


60.7

20.5

00.0

00.0

521.2

6

Trisomy 13 170.6

121.4

30.8

11.2

00.0

350.8

Trisomy 18 511.8

141.6

102.6

11.2

00.0

761.8


40546.6

19550.4

2530.6

231.2

198347.5

7


86972.

38725.

8168.

642.

417903.


44382.

19791.

4177.

310.

213856.




TennesseeTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)TennesseeTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



9.323755.2

58614.0

Trisomy 13 280.7

71.6

350.8

Trisomy 18 481.3

286.5

761.8


42915.

417903.


Notes1.Tennessee does not use the new CDC/BPA codes and cannot distinguish 745.487 from other VSD.2.ICD-9 Procedure 54.713.ICD-9 Procedure Code not equal to 54.714.Birthweight equal to 2500 grams.5.Tennessee does not use the new CDC/BPA codes: information includes the entire range.6.Tennessee does not use the new CDC/BPA codes and cases with 746.106 are included within this category7.Includes probable cases. Tennessee does not use the new CDC/BPA codes and cannot distinguish 745.487.



TexasBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)TexasBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)







201.1

510.6

40.7

13.4

1240.8

Anencephalus 1102.0

351.9

2543.1

81.3

00.0

4172.6

Aniridia 60.1

20.1

70.1

10.2

00.0

160.1


502.7

2843.5

142.4

26.9

5213.2


301.6

3974.9

233.9

310.3

5593.5


321.7

1952.4

81.3

13.4

3842.4


128670.1

524665.0

30350.9

1654.8

1043764.7


2855.2

935.1

3254.0

132.2

13.4

7204.5


110.6

650.8

71.2

26.9

1220.8


20.1

80.1

10.2

00.0

260.2


231.3

951.2

71.2

00.0

2121.3


1266.9

89811.1

589.7

310.3

170110.5


925.0

4775.9

345.7

00.0

9776.1


673.7

4265.3

203.4

310.3

8365.2


120.7

650.8

40.7

00.0

1230.8


442.4

1481.8

71.2

00.0

3202.0


432.3

3524.4

335.5

13.4

7024.4


412.2

2443.0

122.0

13.4

4662.9


1829.9

123215.3

6711.2

310.3

220913.7


40.2

550.7

61.0

00.0

1010.6

Encephalocele 380.7

181.0

991.2

30.5

00.0

1631.0

Epispadias 651.2

231.3

630.8

61.0

00.0

1571.0


1302.4

241.3

1692.1

101.7

26.9

3382.1


120.2

70.4

110.1

10.2

00.0

310.2


784.3

5256.5

142.4

13.4

9535.9


991.8

462.5

660.8

122.0

26.9

2281.4


1246.8

6277.8

172.9

26.9

11767.3


472.6

1592.0

61.0

13.4

3422.1


62366.6

157238.2

15751.5

1172.9

473257.4


27615.0

97912.1

599.9

724.0

186211.5


59132.2

390548.4

28547.8

1344.6

743446.1

Omphalocele 1051.9

452.5

1662.1

91.5

26.9

3352.1



TexasBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)







98353.6

509763.2

30350.9

1241.1

946858.7

1


19910.9

89911.1

345.7

413.7

163510.1


241.3

1351.7

40.7

00.0

2421.5


1588.6

180922.4

244.0

517.1

324120.1


723.9

4635.7

264.4

310.3

8645.4


492.7

1441.8

61.0

00.0

3182.0


764.1

3224.0

183.0

517.1

6664.1


1065.8

5116.3

264.4

310.3

9876.1


472.6

3364.2

50.8

13.4

5853.6


894.9

2873.6

315.2

26.9

6384.0


721.3

170.9

1842.3

81.3

13.4

2841.8


522.8

2813.5

244.0

13.4

5933.7

2


2173.9

553.0

2683.3

233.9

13.4

5663.5


452.5

1551.9

101.7

00.0

3071.9


181.0

580.7

40.7

00.0

1250.8

Trisomy 13 631.1

231.3

941.2

101.7

00.0

1911.2

Trisomy 18 1472.7

492.7

2232.8

223.7

00.0

4482.8


86847.3

572371.0

29249.0

1551.4

1008462.5

3


183402.

806505.

59568.

2918.

1613603.


93563.

411108.

30498.

1508.

824643.




TexasTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)TexasTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)

Age


8.896051.1

220913.7

Trisomy 13 1361.0

552.9

1911.2

Trisomy 18 2411.7

20711.0

4482.8


187892.

1613603.


Notes1.In Texas, coding of patent ductus arteriosus (PDA) is based on the following criteria: infant must be greater than 36 weeks gestation and less than 12weeks of age at diagnosis and not on prostaglandin. Also, PDA is coded only if there is another reportable defect present, or if there was amedical/surgical intervention for this problem.2.Transposition of the great arteries: As Texas does not use the new CDC BPA codes and the exclusion criteria has 745.180, those defects of doubleoutlet right ventricle which we have coded into 745.180 will not be counted in this defect.3.Ventricular Septal Defect: We are unable to distinguish inlet VSD from other types of VSD.

General comments-Due to migration to Oracle data base, Texas can not access 2010 data at this time.-Our case definition includes livebirths, stillbirths, and terminations at any length of gestation and any birth weight.-Texas only reports confirmed and definite diagnoses for any defect reported. Possible/probable cases are not given.-Texas uses the CDC/BPA coding system, but does not use the new CDC/BPA codes.



UtahBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)UtahBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

30.7

00.0

00.0

220.8

Anencephalus 562.7

13.9

112.5

22.2

25.8

732.7

Aniridia 10.0

00.0

00.0

00.0

00.0

10.0


13.9

30.7

00.0

00.0

130.5


00.0

173.9

11.1

00.0

772.9


00.0

204.6

77.7

12.9

1254.6


1454.3

19143.8

4853.1

1543.8

112141.5


1215.8

27.8

255.7

44.4

25.8

1545.7


27.8

20.5

00.0

00.0

200.7


00.0

00.0

11.1

00.0

70.3


00.0

20.5

00.0

00.0

200.7


415.5

4610.5

55.5

411.7

37013.7


00.0

173.9

910.0

514.6

1766.5


415.5

368.3

55.5

25.8

2669.8


13.9

10.2

00.0

00.0

160.6


13.9

40.9

22.2

12.9

742.7


00.0

00.0

00.0

00.0

00.0


00.0

51.1

11.1

38.8

441.6


519.4

8419.3

1415.5

38.8

40114.8


00.0

10.2

11.1

12.9

311.1

Encephalocele 170.8

00.0

61.4

00.0

00.0

240.9

Epispadias 00.0

00.0

10.2

00.0

00.0

20.1


522.5

00.0

184.1

55.5

12.9

772.9

Gastroschisis 924.4

415.5

245.5

1112.2

617.5

1375.1


391.9

00.0

30.7

77.7

00.0

491.8


519.4

143.2

11.1

25.8

1084.0


27.8

143.2

11.1

00.0

923.4


14103.6

4118.5

2041.7

528.7

91665.9


311.6

276.2

22.2

38.8

1585.8


00.0

143.2

55.5

00.0

993.7

Omphalocele 673.2

311.6

143.2

11.1

00.0

863.2


311.6

5813.3

2325.4

411.7

40915.1



UtahBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

81.8

55.5

00.0

381.4


13.9

8419.3

66.6

411.7

41615.4


27.8

173.9

55.5

25.8

1023.8


13.9

51.1

44.4

00.0

451.7


13.9

255.7

44.4

12.9

1355.0


13.9

133.0

66.6

00.0

893.3


13.9

173.9

11.1

25.8

1053.9


13.9

163.7

66.6

25.8

993.7


231.1

00.0

92.1

22.2

25.8

361.3


27.8

184.1

44.4

12.9

1234.6


512.4

00.0

61.4

22.2

00.0

592.2


13.9

71.6

33.3

00.0

381.4

Trisomy 13 371.8

27.8

163.7

11.1

00.0

562.1

Trisomy 18 753.6

519.4

153.4

11.1

12.9

993.7


1454.3

11726.8

1819.9

720.4

65324.2


2579.

43611.

9045.

3423.

270156.


1352.

22131.

4797.

1741.

138913.




UtahTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)UtahTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



9.317467.1

40114.8

Trisomy 13 381.6

186.9

562.1

Trisomy 18 572.3

4216.2

993.7


25947.

270156.


General comments-Patent ductus arteriosus, Congenital Hip Dislocation, and Fetus or newborn affected by maternal alcohol use are not collected in Utah.



VermontBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)VermontBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 41.3

00.0

00.0

00.0

00.0

41.3


00.0

00.0

00.0

00.0

51.6


00.0

00.0

00.0

00.0

123.8


380.0

252.5

00.0

2540.5

13943.9


113.7

126.7

00.0

00.0

00.0

134.1


00.0

00.0

00.0

00.0

10.3


00.0

00.0

00.0

00.0

3611.4


00.0

00.0

00.0

00.0

226.9


00.0

00.0

00.0

00.0

237.3

Common truncus 20.7

00.0

00.0

00.0

00.0

20.6


00.0

00.0

00.0

00.0

113.5


126.7

126.2

00.0

00.0

3912.3


00.0

00.0

00.0

00.0

10.3

Encephalocele 20.7

00.0

00.0

00.0

00.0

20.6

Epispadias 10.3

00.0

00.0

00.0

00.0

10.3


103.3

00.0

00.0

00.0

00.0

103.2

Gastroschisis 51.7

00.0

00.0

00.0

00.0

82.5

1


00.0

00.0

00.0

00.0

92.8


155.2

00.0

138.3

00.0

12073.4


380.0

126.2

00.0

00.0

16050.5

Omphalocele 10.3

126.7

00.0

00.0

00.0

20.6

1


126.7

00.0

00.0

00.0

4614.5

2


00.0

00.0

00.0

00.0

3812.0


00.0

00.0

00.0

00.0

10.3


00.0

00.0

00.0

00.0

113.5


00.0

00.0

00.0

00.0

154.7


00.0

00.0

00.0

00.0

92.8


253.3

00.0

00.0

00.0

196.0


00.0

00.0

00.0

00.0

134.1


82.7

00.0

00.0

00.0

00.0

82.5


00.0

00.0

00.0

00.0

20.6

Trisomy 13 10.3

00.0

00.0

00.0

00.0

10.3



VermontBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Trisomy 18 31.0

00.0

00.0

00.0

00.0

30.9


380.0

378.7

240.7

00.0

19661.8


375.

381.

492.

37.

31698.


181.

185.

261.

21.

16350.




VermontTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)VermontTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.82140.2

3912.3

Trisomy 13 10.4

00.0

10.3

Trisomy 18 20.8

11.9

30.9


5230.

31698.


Notes1.Vermont uses ICD-9 codes but also reviews hospital records and repair procedures to differentiate between Gastroschisis and Omphalocele.2.Included only if weight greater than or equal to 2500 grams.

General comments-Vermont birth data represents births to Vermont residents, regardless of which state the birth occurred in. Non-resident births occurring in Vermont areexcluded.-Vermont predominately uses the ICD-9-CM coding system and does not include probable cases.-Vermont's program only collects data on live births.



VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 250.8

70.6

81.1

51.4

00.0

621.2

Aniridia 50.2

00.0

00.0

00.0

00.0

60.1


60.5

40.6

00.0

00.0

310.6


100.9

131.9

30.8

00.0

511.0


50.4

81.1

30.8

00.0

821.5


112197.8

993142.4

429116.7

677.6

6125115.7


993.3

575.0

142.0

102.7

00.0

2224.2


40.3

20.3

20.5

00.0

290.5


20.2

00.0

10.3

00.0

100.2


131.1

81.1

20.5

00.0

811.5


504.4

7310.5

215.7

112.9

52810.0


403.5

344.9

277.3

00.0

3787.1


403.5

304.3

133.5

00.0

2875.4


111.0

40.6

30.8

00.0

370.7


161.4

60.9

20.5

00.0

591.1


232.0

395.6

164.4

00.0

2935.5


373.2

233.3

20.5

00.0

1362.6


1149.9

11316.2

4311.7

00.0

73213.8


100.9

40.6

51.4

00.0

611.2

Encephalocele 150.5

40.3

40.6

00.0

00.0

290.5

Epispadias 311.0

141.2

50.7

10.3

00.0

591.1


742.4

312.7

101.4

30.8

00.0

1332.5


160.5

111.0

30.4

00.0

00.0

390.7

Gastroschisis 200.7

80.7

60.9

10.3

00.0

671.3


622.0

312.7

71.0

41.1

00.0

1302.5


887.7

334.7

102.7

00.0

3135.9


211.8

142.0

30.8

112.9

1252.4


26144.7

9125.4

7338.8

00.0

156058.0


655.7

476.7

174.6

00.0

3015.7


18015.7

14420.7

8623.4

00.0

127924.2

Omphalocele 50.2

40.3

20.3

10.3

00.0

250.5


107393.6

781112.0

30783.5

564.7

517097.7



VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







14712.8

9012.9

5214.1

112.9

66912.6


897.8

7911.3

164.4

112.9

71313.5


221.9

253.6

51.4

00.0

2174.1


151.3

20.3

30.8

112.9

611.2


221.9

121.7

51.4

112.9

1292.4


282.4

162.3

30.8

225.9

1593.0


403.5

415.9

41.1

00.0

2314.4


554.8

223.2

123.3

00.0

2454.6


504.4

253.6

123.3

00.0

2845.4


121.0

50.7

51.4

00.0

531.0

Trisomy 13 170.6

70.6

111.6

10.3

00.0

541.0

Trisomy 18 431.4

171.5

71.0

71.9

00.0

891.7


39634.5

41860.0

15943.3

338.8

270951.2


114667.

69722.

36761.

773.

529380.


58359.

35765.

18821.

387.

268969.




VirginiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)VirginiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.327231.4

73213.8

Trisomy 13 290.7

222.5

541.0

Trisomy 18 390.9

364.2

891.7


86545.

529380.




WashingtonBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)WashingtonBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)


Defect Total** NotesAnencephalus 15

0.4Cleft lip with and without cleft palate 406

11.4Cleft palate without cleft lip 314

8.8Down syndrome (Trisomy 21) 461

13.0Epispadias 24

0.7Hypospadias* 945

51.9Reduction deformity, lower limbs 64

1.8Reduction deformity, upper limbs 93

2.6Spina bifida without anencephalus 102

2.9Total Live Births 355278

.Total Male Live Births 182015

.




WashingtonTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)WashingtonTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)


Defect Total** NotesDown syndrome (Trisomy 21) 461

13.0Total Live Births 355278

.


General comments-Washington could not report case data by race.-Washington's case totals include 5-7% duplicate cases, depending on condition.



West VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)West VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 262.7

00.0

18.1

00.0

00.0

282.8


00.0

00.0

00.0

00.0

20.2


00.0

00.0

00.0

00.0

40.4


00.0

00.0

00.0

00.0

141.4


1849.2

216.3

333.4

00.0

91690.4


181.9

00.0

00.0

00.0

00.0

202.0


00.0

00.0

00.0

00.0

30.3


00.0

00.0

00.0

00.0

20.2


00.0

00.0

00.0

00.0

50.5


12.7

00.0

111.1

00.0

272.7


12.7

00.0

111.1

00.0

656.4


12.7

00.0

00.0

00.0

313.1


25.5

00.0

00.0

00.0

545.3


00.0

00.0

00.0

00.0

30.3


00.0

00.0

00.0

00.0

101.0


12.7

00.0

00.0

00.0

141.4


38.2

00.0

00.0

00.0

706.9


00.0

00.0

00.0

00.0

80.8

Encephalocele 20.2

00.0

00.0

00.0

00.0

30.3

Epispadias 70.7

00.0

00.0

00.0

00.0

80.8


91.0

00.0

00.0

00.0

00.0

131.3


151.6

00.0

00.0

00.0

00.0

181.8


111.2

25.5

00.0

00.0

00.0

161.6


00.0

00.0

00.0

00.0

353.5


12.7

00.0

00.0

00.0

181.8


422.5

00.0

00.0

00.0

18938.4

Microcephalus 192.0

12.7

00.0

00.0

00.0

292.9


12.7

18.1

00.0

00.0

484.7


1335.5

00.0

111.1

00.0

30430.0

1


00.0

00.0

00.0

00.0

515.0


00.0

00.0

00.0

00.0

80.8


12.7

00.0

111.1

00.0

787.7



West VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







12.7

18.1

00.0

00.0

303.0


00.0

00.0

00.0

00.0

80.8


12.7

00.0

00.0

00.0

111.1


00.0

00.0

00.0

00.0

303.0


00.0

00.0

00.0

00.0

323.2


12.7

00.0

00.0

00.0

464.5


20.2

00.0

00.0

00.0

00.0

40.4


00.0

00.0

00.0

00.0

272.7


121.3

00.0

00.0

00.0

00.0

171.7


00.0

00.0

00.0

00.0

121.2


00.0

00.0

00.0

00.0

121.2

Trisomy 13 30.3

00.0

00.0

00.0

00.0

60.6

Trisomy 18 91.0

12.7

00.0

00.0

00.0

111.1


410.9

00.0

111.1

00.0

24023.7


3660.

1227.

899.

119.

101298.


1781.

600.

458.

55.

49267.




West VirginiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)West VirginiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



3.51416.6

706.9

Trisomy 13 20.2

11.2

60.6

Trisomy 18 60.7

33.5

111.1


8457.

101298.


Notes1.Includes only births greater than or equal to 2500 grams or greater than or equal to 36 weeks gestation.

General comments-Birth defects defined by ICD-9 coding.-Probable cases are included.-Stillbirths and terminations per birth defect are not collected.



WisconsinBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)WisconsinBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 321.3

41.1

82.4

53.5

00.0

491.5

Aniridia 30.1

30.9

00.0

00.0

00.0

60.2


41.1

10.3

00.0

00.0

200.6


20.6

133.9

00.0

00.0

331.0


10.3

10.3

00.0

11.8

220.7


11934.1

13239.3

3726.1

4277.0

134039.8


481.9

72.0

30.9

10.7

00.0

591.8

1


00.0

00.0

00.0

00.0

30.1


00.0

00.0

00.0

00.0

80.2


10.3

51.5

10.7

00.0

391.2


277.7

319.2

117.8

814.7

3169.4


164.6

133.9

74.9

23.7

1975.8


82.3

72.1

00.0

11.8

571.7


10.3

20.6

00.0

00.0

170.5


41.1

30.9

00.0

00.0

270.8


61.7

236.8

42.8

00.0

1975.8


61.7

92.7

10.7

11.8

591.8


267.4

6519.3

2719.1

59.2

43012.8


00.0

20.6

10.7

11.8

80.2

Encephalocele 90.4

10.3

00.0

10.7

00.0

110.3

Epispadias 190.8

51.4

20.6

10.7

00.0

270.8


481.9

51.4

41.2

10.7

00.0

581.7


220.9

102.9

20.6

00.0

35.5

371.1


160.6

30.9

20.6

21.4

00.0

230.7


236.6

133.9

21.4

00.0

1263.7


113.1

41.2

00.0

11.8

601.8


12973.3

5733.2

1419.6

1139.6

117167.9

Microcephalus 421.7

61.7

61.8

21.4

00.0

561.7


3710.6

4011.9

2819.8

1425.7

60718.0


11532.9

11032.7

3121.9

2749.5

98429.2


205.7

113.3

42.8

47.3

1023.0


00.0

20.7

10.9

00.0

90.3



WisconsinBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

00.0

50.1


61.7

113.3

32.1

11.8

1023.0


41.1

41.2

21.4

00.0

431.3


102.9

82.4

32.1

23.7

852.5


72.0

61.8

32.1

11.8

1143.4


92.6

103.0

21.4

11.8

962.8


164.6

113.3

32.1

11.8

912.7


50.2

10.3

10.3

00.0

00.0

70.2


51.4

113.3

00.0

35.5

692.0


271.3

20.7

41.5

00.0

12.3

341.2


30.9

20.6

21.4

00.0

240.7

2


00.0

10.4

00.0

00.0

20.1

Trisomy 13 200.8

30.9

30.9

10.7

00.0

270.8

Trisomy 18 502.0

72.0

61.8

21.4

00.0

662.0


6117.5

12236.3

3323.3

2036.6

85525.4

3


34946.

33608.

14170.

5458.

337011.


17602.

17172.

7157.

2778.

172507.




WisconsinTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)WisconsinTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.919945.9

43012.8

Trisomy 13 180.6

92.1

270.8

Trisomy 18 401.4

266.0

662.0


43322.

337011.


Notes1.Cannot include Inlet VSD, common atrioventricular (AV) canal type VSD.2.Cases with tricuspid stenosis or hypoplasia are included.3.Including probable cases, cannot exclude; Hospital practice in coding is not known.



Department of DefenseBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)Department of DefenseBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 220.6

70.9

50.8

31.2

00.0

380.7

1

Aniridia 70.2

10.1

00.0

00.0

00.0

80.1


192.3

132.0

51.9

32.9

1001.8


121.5

121.9

51.9

43.8

1031.8


202.5

182.8

62.3

54.8

1943.4


75593.0

54185.1

18571.8

7773.8

484385.0

2


2235.9

587.1

406.3

103.9

54.8

3426.0

3


91.1

91.4

20.8

11.0

601.1


20.2

20.3

10.4

00.0

210.4


172.1

132.0

31.2

21.9

1432.5


506.2

609.4

3011.6

87.7

64711.4


627.6

639.9

238.9

76.7

62911.0


688.4

477.4

155.8

109.6

4918.6


151.8

132.0

51.9

32.9

1232.2


253.1

304.7

83.1

11.0

1763.1


8410.3

11618.2

4115.9

2624.9

108819.1


263.2

243.8

93.5

21.9

2193.8


10512.9

9014.2

3513.6

98.6

80414.1

1


81.0

71.1

31.2

32.9

631.1

Encephalocele 381.0

121.5

121.9

31.2

32.9

691.2

Epispadias 571.5

162.0

81.3

31.2

11.0

851.5


1123.0

202.5

101.6

51.9

11.0

1512.6


260.7

40.5

10.2

00.0

00.0

310.5


1413.7

445.4

304.7

145.4

76.7

2454.3


8911.0

467.2

207.8

98.6

5349.4


404.9

233.6

93.5

76.7

2434.3


37691.2

23572.4

11988.9

4992.0

291199.4


9711.9

538.3

249.3

76.7

57910.2


26432.5

30848.4

11544.6

4946.9

251244.1


20725.5

11818.6

3714.4

1918.2

108219.0


243.0

162.5

93.5

21.9

1462.6


9211.3

15724.7

2810.9

3331.6

140524.7



Department of DefenseBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







354.3

253.9

2710.5

54.8

3375.9


263.2

111.7

41.6

43.8

1492.6


212.6

253.9

72.7

43.8

1883.3


263.2

416.4

135.0

65.7

3075.4


283.4

284.4

103.9

109.6

2794.9

1


485.9

406.3

259.7

76.7

3526.2


521.4

151.8

142.2

41.6

00.0

891.6


334.1

355.5

155.8

43.8

3085.4


1453.9

202.5

203.1

124.7

21.9

2033.6


172.1

40.6

51.9

11.0

861.5

Trisomy 13 401.1

192.3

71.1

10.4

00.0

681.2

1

Trisomy 18 701.9

91.1

142.2

51.9

00.0

991.7

1


48159.2

45271.1

15861.3

7369.9

405171.1

4


81201.

63572.

25768.

10440.

569832.


41247.

32457.

13382.

5324.

292921.




Department of DefenseTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)Department of DefenseTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



10.227252.9

80414.1

1

Trisomy 13 561.1

101.9

681.2

1

Trisomy 18 601.2

346.6

991.7

1


51421.

569832.


Notes1.DoD Registry only captures livebirths2.DoD Registry relies on ICD-9-CM codes and cannot differentiate PFO3.DoD Registry relies on ICD-9-CM codes and cannot distinguish 745.4874.All ICD-9-CM coded cases that meet DoD Registry case criteria are included. DoD Registry relies on ICD-9-CM codes and cannot distinguish745.487

General comments-Criteria for a case: One diagnosis from institutional records, or 2 diagnoses from professional encounter records-Infants that appear as multiples of same gender are excluded from analysis-Race/Ethnicity for the DoD Birth and Infant Health Registry is based on the military parent through whom the infant receives military health carebenefits. This may be the infants' mother or father.



cwm7

Typewritten Text

STATE BIRTH DEFECTS SURVEILLANCE

PROGRAM DIRECTORY

Updated August 2013

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

Contacts

Cindy Ashley, RN, BSN

Alabama Newborn Screening Program

201 Monroe Street

Montgomery, AL 36104

Phone: 334-206-2971 Fax: 334-206-3791

E-mail: [email protected]

Rachel Montgomery, RN, BSN

Alabama Newborn Screening Program

201 Monroe Street

Montgomery, AL 36104

Phone: 334-206-5955 Fax: 334-206-3063


Alaska

Alaska Birth Defects Registry (ABDR)

Purpose: Surveillance, Research

Partner: Local Health Departments, Universities, Hospitals, Community

Nursing Services, Environmental Agencies/Organizations, Early

Childhood Prevention Programs, Advocacy Groups

Program status: Currently collecting data

Start year: 1996

Earliest year of available data: 1996

Organizational location: Department of Health and Social Services,

Division of Public Health, Section of Women’s, Children’s and Family

Health, Maternal Child Health Epidemiology

Population covered annually: 11,000

Statewide: Yes

Current legislation or rule: 7 AAC 27.012

Legislation year enacted: 1996

Case Definition

Outcomes covered: ICD-9 Codes 237.7, 243, 255.2, 270, 271, 277, 279,

282, 284.0, 331, 334, 335, 343, 359, 362.74, 389, 740-760, 760.71

Pregnancy outcome: Live Births (All gestational ages and birth weights)

Age: Birth to sixth birthday

Residence: In and out of state births to Alaska residents

Surveillance Methods

Case ascertainment: Passive case ascertainment, Population based,

Passive case ascertainment with case verification of selected conditions

including FAS and NTDs

Vital Records: Birth certificates

Other state based registries: Programs for children with special needs,

Newborn hearing screening program, Newborn metabolic screening

program, Genetics clinics, Specialty clinics (heart, cleft lip/palate,

neurodevelopmental), MIMR (FIMR), Public health nursing

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-9 code.

Pediatric & tertiary care hospitals: Disease index or discharge index,

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.

Third party payers: Medicaid databases, Indian health services

Other specialty facilities: Genetic counseling/clinical genetics facilities

Other sources: Physician reports

Case Ascertainment

Conditions warranting chart review in newborn period: any chart with

an ICD-9 code of 760.71 and other birth defects as selected for review by

the ABDR Program Manager.

Coding: ICD-9-CM

Data Collected

Infant/fetus: Identification information (name, address, date-of-birth,

etc.), Demographic information (race/ethnicity, sex, etc.), Birth

measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic

information

Data Collection Methods and Storage

Data 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 storage/management: Access

Data Analysis

Data analysis software: Epi-Info, SAS, Access

Quality assurance: Validity checks, Re-abstraction of cases, Double-

checking of assigned codes, Comparison/verification between multiple

data sources, Timeliness, Record linkage and de-duplication

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),

Needs assessment, Service delivery, Grant proposals, Education/public

awareness, Prevention projects, Monitoring outbreaks and cluster

investigations

System Integration

System links: Link case finding data to final birth file

Funding

Funding Source: 80% general state funds, 20% MCH funds

Other

Web site: www.epi.alaska.gov/mchepi/ABDR

Surveillance reports on file: see website

Contacts

Jennifer A. Bisson

State of Alaska, Division of Public Health

3601 C Street, Suite 358

Anchorage, AK 99503

Phone: 907-269-8073 Fax: 907-269-3493




Arizona

Arizona Birth Defects Monitoring Program (ABDMP)

Purpose: Surveillance, Referral to Services, Referral to

Prevention/Intervention


Nursing Services, Early Childhood Prevention Programs, Advocacy

Groups, Legislators


Start year: 1986


Organizational location: Department of Health (Bureau of Public Health

Statistics/Office of Health Registries)

Population covered annually: 87,053 live births and 443 spontaneous

fetal losses in AZ to AZ residents, 2010

Statewide: Yes

Current legislation or rule: Statute-

www.azleg.state.az.us/ars/36/00133.htm

Rule- www.azsos.gov/public_services/Title_09/9-04.htm; Effective 1991


Case Definition

Outcomes covered: Major birth defects and genetic diseases, as defined

by the BPA/MACDP codes. Covered conditions vary by year of birth.

Pregnancy outcome: Live Births (All gestational ages and birth weights),

Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation

and greater, Stillbirths with a fetal death certificate can be of any

gestational age or weight), Terminations are not included in the electronic

database.

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

(which occurs 2-3 years after the child’s birth or fetal death), then the

more precise diagnosis is used.

Residence: Cases are born in Arizona and have an Arizona abstract

indicating mother's residence in AZ


Case ascertainment: Active case ascertainment, Population based, 1986-

2004: 44 categories; 2005-2009: 31 categories; 2010: 32 categories of

defects; 2011:34 categories of defects.

Vital Records: Birth certificates, Fetal death certificates


Newborn hearing screening program

Delivery hospitals: Disease index or discharge index, Discharge

summaries, Mother's chart for stillborn


Discharge summaries, Mother's chart for stillborn

Third party payers: Indian Health Services

Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.),

Cytogenetic laboratories, Genetic counseling/clinical genetics facilities

Case Ascertainment

Conditions warranting chart review in newborn period: Any chart with

a ICD9-CM code 740-759, Any chart with a selected list of ICD9-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

prenatal diagnosed or suspected cases

Conditions warranting chart review beyond the newborn period: Any

infant with a codeable defect

Coding: CDC coding system based on BPA

Data Collected



measurements (weight, length, gestation, etc.), Tests and procedures used

to make birth defect diagnosis

Mother: Identification information (name, address, date-of-birth, etc.),

Demographic information (race/ethnicity, sex, etc.), Gravidity/parity,

Illnesses/conditions, 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.), Family history


Data Collection: Hard copy abstract/report filled out by ABDMP staff

Database storage/management: Access, Oracle

Data Analysis

Data analysis software: SAS, Access



data sources, Clinical review, Timeliness



variables, Monitoring outbreaks and cluster investigation, 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 Integration

System links: Link to other state registries/databases, Link case finding

data to final birth file

Funding

Funding Source: 15% general state funds, 14% MCH funds, and 71%

CDC Cooperative grant funds

Other

Web site: http://www.azdhs.gov/phs/phstats/bdr/index.htm

Surveillance reports on file: Same as Above

Contacts

Timothy J. Flood, M.D.

Arizona Department of Health Services

150 North 18th Ave., Ste. 550

Phoenix, AZ 85007

Phone: 602-542-7331 Fax: 602-364-0082


Dianna Contreras

Arizona Department of Health Services

150 North 18th Ave., Ste. 550

Phoenix, AZ 85007

Phone: 602-542-7335 Fax: 602-542-7447




Arkansas

Arkansas Reproductive Health Monitoring System (ARHMS)

Purpose: Surveillance, Research, Referral to Prevention/Intervention

Partner: Local Health Departments, Universities, Hospitals, Advocacy

Groups, Legislators


Start year: 1980


Organizational location: University, Arkansas Children's Hospital


Statewide: Yes

Current legislation or rule: Senate Bill Act 214


Case Definition

Outcomes covered: major structural birth defects


Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational

ages), Elective Terminations (All gestational ages)

Age: two years after delivery

Residence: in and out of state births to state residents


Case ascertainment: Active case ascertainment, Population based



summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs,

ICU/NICU logs or charts


Discharge summaries, ICU/NICU logs or charts, Specialty outpatient

clinics


Genetic counseling/clinical genetics facilities


Case Ascertainment



codes 740-759, All stillborn infants



Coding: locally modified BPA/CDC and NBDPS coding system

Data Collected



measurements (weight, gestation, Apgar, etc.), Tests and procedures,

Birth defect diagnostic information



Prenatal diagnostic information, Family history




Data Collection: Electronic file/report filled out by staff at facility

(laptop, web-based, etc.)


Data Analysis

Data analysis software: SAS, Access, STATA

Quality assurance: Validity checks, Double-checking of assigned codes,

Comparison/verification between multiple data sources, Clinical review,

Timeliness




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 Integration


Funding

Funding Source: 100% general state funds

Other

Web site: http://arbirthdefectsresearch.uams.edu/

Contacts

Bridget S. Mosley, MPH

Arkansas Reproductive Health Monitoring System

13 Children's Way, Slot 512-40

Little Rock, AR 72202

Phone: 501-364-8951 Fax: 501-364-5050


Charlotte A. Hobbs, MD, PhD

UAMS College of Medicine; Arkansas Center for Birth Defects Research

and Prevention

13 Children's Way, Slot 512-40

Little Rock, AR 72202

Phone: 501-364-5000 Fax: 501-364-5107




California

California Birth Defects Monitoring Program (CBDMP)


Partner: Local Health Departments, Universities, Hospitals,

Environmental Agencies/Organizations


Start year: 1983


Organizational location: Department of Health (California Department

of Public Health: Maternal, Child, Adolescent Health Division, Center for

Family Health)


Statewide: No, The Program 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, the Program has statutory authority to conduct

active surveillance anywhere in the state when warranted by

environmental incidents or concerns.

Current legislation or rule: Health and Safety Code, Division 102, Part

2, Chapter 1, Sections 103825-103855, effective 1982, recodified 1996.


Case Definition

Outcomes covered: Serious structural birth defects, primarily

encompassed within ICD codes 740-759


Fetal deaths - stillbirths, spontaneous abortions, etc. (less than 20 week

gestation, 20 weeks gestation and greater),, Elective Terminations (less

than 20 week gestation, 20 weeks gestation and greater)

Age: one year

Residence: In-state births to residents of 1 of 8 counties; does not include

births in military hospitals.





ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs,

Surgery logs


Discharge summaries, ICU/NICU logs or charts, Pediatric logs,

Postmortem/pathology logs, Surgery logs, Laboratory logs


Cytogenetic laboratories, Genetic counseling/clinical genetics facilities,

Maternal serum screening facilities

Case Ascertainment




chart with selected defects or medical conditions (e.g., abnormal facies,

congenital heart disease), All stillborn infants, All neonatal deaths, All

elective abortions, All prenatal diagnosed or suspected cases, Apgar 0-0

Conditions warranting chart review beyond the newborn period: Facial

dysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g.,

seizure), GI condition (e.g., recurrent blockage), GU condition (e.g.,

recurrent infections), Cardiovascular condition, All infant deaths

(excluding prematurity), Ocular conditions, Any infant with a codeable

defect

Coding: CDC BPA coding system but modified for use in California

Data Collected




Infant complications, Birth defect diagnostic information



Illnesses/conditions, Family history






Database storage/management: SQL server

Data Analysis

Data analysis software: SAS



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 investigation, 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, Grant proposals, Education/public

awareness

System Integration

System links: Link case finding data to final birth file, Hospital discharge.

CBDMP links case finding data to final vital statistics birth and fetal

death files

Funding

Funding Source: 100% special fund

Other

Web site: www.cdph.ca.gov/programs/CBDMP

Comments: Please send inquiries to [email protected].

Contacts

Barbara Warmerdam

California Birth Defects Monitoring Program,

Maternal, Child and Adolescent Health Program

California Department of Public Health

1615 Capitol Avenue, MS 8304

Sacramento, CA 95814

Phone: 916-341-6677 Fax: 916-341-6499


Shabbir Ahmad, DVM, MS, PhD

Maternal, Child, and Adolescent Health Program

Center for Family Health

California Department of Public Health

1615 Capitol Ave, MS 8304

Sacramento, CA 95814

Phone: 916-650-0300 Fax: 916-650-0305




Colorado

Colorado Responds To Children With Special Needs: Colorado (CRCSN)





Childhood Prevention Programs, Advocacy Groups


Start year: 1988


Organizational location: Department of Health

(Epidemiology/Environment)

Population covered annually: 65,188(2012)

Statewide: Yes

Current legislation or rule: Colorado Revised Statutes (CRS) 25-1.5-101

- 25-1.5-105


Case Definition

Outcomes 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


Fetal deaths - stillbirths, spontaneous abortions, etc. (less than 20 week

gestation, 20 weeks gestation and greater, less than 20 week limited to

selected post-mortem pathology sites)

Age: up to the 3rd birthday (up to the 10th birthday for fetal alcohol

syndrome)

Residence: events occurring in-state or out-of-state to Colorado residents


Case ascertainment: Combination of active and passive case

ascertainment

Vital Records: Birth certificates, Death certificates, Fetal death

certificates

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, selected

postmortem pathology sites


Postmortem/pathology logs, Specialty outpatient clinics, selected

postmortem pathology sites

Third party payers: Medicaid databases

Other specialty facilities: Cytogenetic laboratories, Genetic

counseling/clinical genetics facilities

Other sources: Physician reports, selected sites for fetal alcohol

syndrome and muscular dystrophy

Case Ascertainment

Conditions warranting chart review in newborn period: selected chart

reviews for prenatal to age 3: for statistical trends monitoring (20

conditions - categories); selected death and fetal deaths; fetal alcohol

syndrome (to age 10); active case ascertainment data sources

(postmortem pathology and specialty clinics); quality control (selected

procedures); and others as needed.

Coding: ICD-9-CM, extended code utilized to describe syndromes,

further detail of a condition, and to specify status

Data Collected




information



Illnesses/conditions, Prenatal care, Pregnancy/delivery complications,

Maternal risk factors


Demographic information (race/ethnicity, sex, etc.)


Data 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

Database storage/management: Access, Conversion to SQL Server

Data Analysis

Data analysis software: SAS, Access, ArcView (GIS software),

Maptitude, SaTScan

Quality assurance: Validity checks, Comparison/verification between

multiple data sources, Timeliness, ongoing quality control procedures for

problematic conditions and situations; records linkage and de-duplication.




Time-space cluster analyses, Capture-recapture analyses, Observed vs.

expected analyses, Epidemiologic studies (using only program data),


assessment, Referral, Grant proposals, Education/public awareness,

Prevention projects, environmental studies

System Integration

System links: Link to other state registries/databases, Ongoing match to

vital records files (birth, death, fetal death)

Funding

Funding Source: 26% General state Funds, 31% Service fees, 43% CDC

grant

Other

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

Contacts

Margaret F. Ruttenber, MSPH

Colorado Responds to Children with Special Needs

4300 Cherry Creek Drive, South

Denver, CO 80246-1530

Phone: 303-692-2636 Fax: 303-782-0904


Carol Stanton, MBA

CRCSN

4300 Cherry Creek Drive, South

Denver, CO 80246-1530

Phone: 303-692-2621 Fax: 303-782-0904




Connecticut

Connecticut Birth Defects Registry (CTBDR)

Purpose: Surveillance, Research, Referral to Services, Referral to

Prevention/Intervention, reporting for MCH Block Grant

Partner: Hospitals, Environmental Agencies/Organizations, Early

Childhood Prevention Programs, Advocacy Groups, CT Council on

Genomics


Start year: 2002


Organizational location: Department of Health (Maternal and Child

Health)


Statewide: Yes

Current legislation or rule: Sec. 19a-56a. (Formerly Sec. 10a-132b),

Birth defects surveillance program; Sec. 19a-54. (Formerly Sec. 19-

21a),Registration of physically handicapped children; Sec. 19a-53.

(Formerly Sec. 19-21), Reports of physical defects of children.

Legislation year enacted: Sec. 10a-132b: 1991; Sec. 19-21a: 1949 Sec.

19-21: 1949.

Case Definition

Outcomes covered: All major structural birth defects; biochemical,

genetic and hearing impairment through linkage with Newborn Screening

System; any condition that 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

Pregnancy outcome: Live Births (All gestational ages and birth weights,

Other gestational age and/or birth weight criterion, PDA ≥ to 2500 grams

birth weight)

Age: Up to one year after delivery for birth defects

Residence: In state births to state residents


Case ascertainment: Passive case ascertainment, Population based

Vital Records: Birth certificates, Death certificates, Matched birth/death

file, inpatient hospitalizations and emergency room visits



program


summaries, Reports from health care professionals in newborn nurseries

and NICUs.


Discharge summaries, Reports from health care professionals in pediatric

inpatient and outpatient services planned for future.

Midwifery facilities: Midwifery facilities

Other sources: Physician reports, Mandatory reporting by health care

providers and facilities; CSHCN Programs; Newborn Screening System

(for genetic disorders and hearing impairment).

Case Ascertainment

Coding: ICD-9-CM, test written in 'other' field categories

Data Collected







Illnesses/conditions, Prenatal care, Prenatal diagnostic information,

Pregnancy/delivery complications, Maternal risk factors, Family history









Data Analysis

Data analysis software: SAS, Access, STATA, Arc GIS


multiple data sources, Timeliness




Time-space cluster analyses, Capture-recapture analyses, Epidemiologic

studies (using only program data), Needs assessment, Service delivery,

Referral, Grant proposals, Education/public awareness, Prevention

projects, Provider education

System Integration


Funding

Funding Source: 100% MCH funds

Other

Web site: http://www.ct.gov/dph/birthdefectsregistry

Contacts

Karin Davis, B.S.

Connecticut Department of Public Health

Family Health Division

410 Capitol Avenue, MS #11MAT

Hartford, CT 06134

Phone: 860-509-7499 Fax: 860-509-7720




Delaware

Delaware Birth Defects Surveillance Project

Purpose: Surveillance, Referral to Prevention/Intervention

Partner: Hospitals, Early Childhood Prevention Programs


Start year: 2007

Earliest year of available data: 2007, 2008, 2009

Organizational location: Department of Health and Social Services,

Division of Public Health, Family Health Services


Statewide: Yes

Current legislation or rule: House Bill No. 197, an act to amend Title 16

of the Delaware Code relating to Birth Defects


Case Definition

Outcomes covered: Birth Defects Registry - Selected birth defects for

passive surveillance, developmental disabilities if due to a birth defect,

selected metabolic defects, genetic diseases, infant mortality, congenital

infections, Autism

Pregnancy outcome: Live Births (Other gestational age and/or birth

weight criterion, any gestation for live birth, greater than 20 weeks for

fetal death), Fetal deaths - (stillbirths, spontaneous abortions, etc. (20

weeks gestation and greater)

Age: birth to 5 years

Residence: in-state and out-of-state birth to state resident, and in-state

birth to state non-resident.



ascertainment, Population based

Vital Records: Birth certificates, Death certificates, hospital discharge

records/data



program, Development Disabilities Surveillance, Cancer registry,

AIDS/HIV registry


summaries, Postmortem/pathology logs, High risk pregnancy


Discharge summaries, Specialty outpatient clinics


Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.)


Case Ascertainment


a ICD9-CM code 740-759, Any chart with selected defects or medical

conditions (e.g., 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


dysmorphism or abnormal facies, Failure to thrive, Development delay,

Cardiovascular condition, All infant deaths (excluding prematurity),

Ocular conditions, Auditory/hearing conditions, Any infant with a

codeable defect

Coding: ICD-9-CM, six-digit modified BPA/ICD-9 codes

Data Collected







Illnesses/conditions, Prenatal care, Pregnancy/delivery complications,





Data Collection: Printed abstract/report filled out by staff, Electronic

file/report submitted by other agencies (hospitals, etc.)

Database storage/management: Natus Medical Inc.

Data Analysis

Data analysis software: Natus Medical Inc.


multiple data sources, Clinical review, none at this time

Data use and analysis: Only became active in early 2010 with review of

calendar year 2007

System Integration

System links: link to Newborn Bloodspot and Hearing Screening

System integration: Initial check into Newborn Bloodspot Screening

records with a link that pulls info to Birth Defects Registry from

Newborn Bloodspot Screening case management system.

Funding

Funding Source: 100% genetic screening revenues

Contacts

Leah Jones Woodall, MPA

DE Division of Public Health

417 Federal Street

Dover, DE 19901

Phone: (302) 744-4825 Fax: (302) 739-3313


Kristin Maiden, PhD

Christiana Care Health System

4755 Ogletown Stanton Rd

Newark, DE 19713

Phone: (302) 733-5032




District of Columbia

District Of Columbia Birth Defects Surveillance And Prevention Program (DC BDSPP)

Purpose: Research, Referral to Services, Referral to


Partner: Hospitals

Program status: Interested in developing a surveillance program




Data Collected

Mother: Maternal risk factors

Contacts

Karen Watts, BSN, MPA, MBA, RNC, FAHM, PMP

Department of Health, Community Health Administration

899 North Capitol Street, NE, 3rd Floor

Washington, DC 20002

Phone: 202-442-9405 Fax: 202-671-0849


Sandra A. Davis, MPH

Department of Health, Community Health Administration

899 North Capitol Street, NE, 3rd Floor

Washington, DC 20002

Phone: 202-478-5820 Fax: 202-671-0854




Florida

Florida Birth Defects Registry (FBDR)

Purpose: Surveillance, Research, Referral to Prevention/Intervention,

educate health care professionals, women of childbearing age and general

public about birth defects.


Environmental Agencies/Organizations, Early Childhood Prevention

Programs, Advocacy Groups, Legislators, federal and state agencies


Start year: 1998



(Epidemiology/Environment), University

Population covered annually: 212,954 in 2012

Statewide: Yes

Current 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.


Case Definition

Outcomes covered: major structural malformations and selected genetic

disorders

Pregnancy outcome: Live Births

Age: until age 1

Residence: Florida


Case ascertainment: Passive case ascertainment, Population based, FL

has two CDC funded cooperative agreements that use active case

ascertainment, which is linked to the passive surveillance program.


file

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 Ascertainment

Coding: ICD-9-CM

Data Collected








Pregnancy/delivery complications, Maternal risk factors




Data Collection: Electronic file/report submitted by other agencies

(hospitals, etc.)

Database storage/management: Access, Dedicated server for birth

defects data.

Data Analysis

Data analysis software: SAS, Access, SQL, dBASE


multiple data sources




Observed vs. expected analyses, Epidemiologic studies (using only


studies, Grant proposals, Education/public awareness, Prevention projects

System Integration


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.

Funding

Funding Source: 62% general state funds, 34% CDC grant

Other

Web site: www.fbdr.org

Surveillance reports on file: publications, procedure manuals, electronic

case ascertainment database and educational materials

Comments: CDC/NCBDDD Cooperative Agreement for enhanced

surveillance of selected birth defects, referral for services and prevention

activities.

CDC/NCEH Cooperative Agreement for Environmental Public Health

Tracking for active surveillance of selected birth defects and analysis of

environmental data and birth defects.

Contacts

Jane A. Correia, B.S.

Florida Department of Health

4052 Bald Cypress Way, Bin A12

Tallahassee, FL 32399-1712

Phone: 850-245-4444, ext. 2198 Fax: 850-922-8473


Suzanne R. Block, MPH

Florida Department of Health

4052 Bald Cypress Way, Bin A12

Tallahassee, FL 32399-1712

Phone: 850-245-4444 ext. 4572 Fax: 850-922-8473




Georgia

Metropolitan Atlanta Congenital Defects Program (MACDP)


Partner: Local Health Departments, Universities, Hospitals, Advocacy

Groups, Laboratories, Prenatal Diagnostic Providers


Start year: 1967


Organizational location: CDC, National Center on Birth Defects and

Developmental Disabilities


Statewide: No, Births to mothers residing within one of three central

counties in the metropolitan Atlanta area of the state of Georgia

Current legislation or rule: State Laws Official Georgia Code Annotated

(OCGA) 31-12-2

Case Definition

Outcomes covered: All major structural and genetic birth defects

Pregnancy outcome: Live Births (≥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




certificates




induction logs and miscarriage logs





Case Ascertainment



codes outside 740-759, Any chart with selected defects or medical


certificate with a birth defect box checked, Infants with low birth weight

or low gestation (birth weight < 2500 grams and/or 20- to <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



seizure), GI condition (e.g., recurrent blockage), Cardiovascular

condition, All infant deaths (excluding prematurity), Any infant with a

codeable defect


Data Collected












Data Collection: Electronic file/report filled out by program staff (laptop,

web-based, etc.)

Database storage/management: Access, SQL Server, SAS

Data Analysis

Data analysis software: SPSS, SAS, Access


Comparison/verification between multiple data sources, Clinical review,

Timeliness




Time-space cluster analyses, Observed vs. expected analyses,


potential cases for other epidemiologic studies, Service delivery,

Education/public awareness, Prevention projects, survival analysis

System Integration

System links: Link case finding data to final birth file, National Death

Index; Death certificates, and Fetal Death certificates, Records;

Laboratory Records

Funding

Funding Source: 100% Intramural CDC funding

Other

Web site: http://www.cdc.gov/ncbddd/bd/macdp.htm

Surveillance 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.

Contacts

Janet D. Cragan, MD, MPH

Centers for Disease Control and Prevention

1600 Clifton Rd., MS E-86

Atlanta, GA 30333

Phone: 404-498-3807 Fax: 404-498-3040


Pamela Costa, MS

Centers for Disease Control and Prevention

1600 Clifton Rd., MS E-86

Atlanta, GA 30333

Phone: 404-498-3488 Fax: 404-498-3040




Georgia

Georgia Birth Defects Reporting And Information System (GBDRIS)


Contacts

Todd Griffin, MS, MSPH

GA Division of Public Health, MCH Section

2 Peachtree St., NW, Suite 11-463

Atlanta, GA 30303

Phone: 404-463-2191 Fax: 404-657-2910




Hawaii

Hawaii Birth Defects Program (HBDP)

Purpose: Surveillance, Report incidences and trends, develop preventive

strategies, develop a statewide registry



Groups, Legislators, Hawaii Health Data Warehouse


Start year: 1988


Organizational location: Department of Health (Children with Special

Health Needs Branch)

Population covered annually: 18,913 (average over past 3 years)

Statewide: Yes

Current legislation or rule: HRS §321.421 to 426; HRS §321.41 to 44


Case Definition

Outcomes covered: All outcomes identified on the ICD-9 and CDC/BPA

codes for the NBDPN Annual Report to CDC as well as other adverse

neonatal conditions such as congenital infections, fetal alcohol syndrome,

and specific chromosomal syndromes



ages), Elective Terminations (All gestational ages, Elective medical

terminations that were carried out because a screening test or diagnostic

procedure documented that the fetus was severely impaired with a birth

defect, and the parents elected not to bring the baby to term)

Age: Up to one year after delivery

Residence: All in-state Hawaii births (resident and non-resident).


Case ascertainment: Active case ascertainment, Population based,

Hospital based



ICU/NICU logs or charts, Postmortem/pathology logs, Surgery logs,

Prenatal summaries


Discharge summaries, ICU/NICU logs or charts, Postmortem/pathology

logs, Surgery logs, Laboratory logs




Case Ascertainment




conditions (e.g., abnormal facies, congenital heart disease), All stillborn

infants, All neonatal deaths, All prenatal diagnosed or suspected cases,

Medical terminations and spontaneous abortions where fetus was

diagnosed with a birth defect, and parents elected not to bring baby to

term, or mother spontaneously aborted.


dysmorphism or abnormal facies, Failure to thrive, Cardiovascular

condition, All infant deaths (excluding prematurity), Ocular conditions,

Any infant with a codeable defect

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

Data Collected










Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions,

Family history





Data Analysis








Needs assessment, Grant proposals, Education/public awareness,

Prevention projects, State Surveillance Data Report

Funding

Funding Source: 100% Birth Defects Special Fund (state fund from

marriage license fee)

Other

Web site: http://hawaii.gov/health/family-child-

health/genetics/hbdhome.html

Surveillance reports on file: Thirteen HBDP Statewide Surveillance Data

Reports: (1) 1989-1991, (2) 1988-1993, (3) 1988-1994, (4) 1988-1995,

(5) 1987-1996, (6) 1986-1997, (7) 1986-1998, (8) 1986-1999, (9) 1986-

2000, (10) 1986-2001, (11) 1986-2002, (12) 1986-2003, (13) 1986-2005.

Additional information on file: Hawai'i Statutory Authority; HBDP

Publications; HBDP Case finding list; HBDP BPA Codes

Contacts

Jonathan B. Kimura M.S.C.P.

Children with Special Health Needs Branch

Hawaii State Department of Health

741 Sunset Avenue

Honolulu, HI 96816

Phone: 808-733-9065 Fax: 808-733-9068


Sylvia M. Au, M.S.

Children with Special Health Needs Branch

Hawaii State Department of Health

741 Sunset Avenue

Honolulu, HI 96816

Phone: 808-733-9063 Fax: 808-733-9068




Idaho


Contacts

Pam Harder

Idaho Dept. of Health & Welfare

450 West State Street

Boise, ID 83720

Phone: 208 -334-6658 Fax: 208-334-4946


Jacquie Watson

Idaho Department of Health and Welfare

450 West State Street

Boise, ID 83720

Phone: 208-334-5963 Fax: 208-334-4946


Illinois

Adverse Pregnancy Outcomes Reporting System (APORS)

Purpose: Surveillance, Referral to Services, Prevention/Intervention

Partner: Local Health Departments, Universities, Hospitals, Early

Childhood Prevention Programs, State agency serving children with special

healthcare needs


Start year: 1986


Organizational location: Department of Health (Epidemiology/Environment)


Statewide: Yes

Current legislation or rule: Illinois Health and Hazardous Substances

Registry Act (410 ILCS 525)


Case Definition

Outcomes covered: ICD-9-CM Codes 740.0 through 759.9; infants

positive for controlled substances; very low birth weight (< 1500g); fetal

death; death during the newborn hospital stay; serious congenital

infections; congenital endocrine, metabolic or immune disorders;

congenital blood disorders; other conditions such as retinopathy of

prematurity, intrauterine growth retardation, FAS



and greater)

Age: Up to 2 years of age

Residence: In and out of state births to state residents



ascertainment, Population based, Hospital based


Other state based registries: Newborn metabolic screening program


summaries, hospitals mandated to identify and report newborn cases


Discharge summaries, hospitals mandated to report newborns discharged

from any of the NICU or specialty units


Case Ascertainment

Conditions warranting chart review in newborn period: Any chart with a

selected list of ICD9-CM codes outside 740-759, Any chart with selected

defects or medical conditions (e.g. abnormal facies, congenital heart

disease), All neonatal deaths



Coding: Modified CDC/BPA coding system

Data Collected

Infant/fetus: Identification information (name, address, date-of-birth, etc.),

Demographic information (race/ethnicity, sex, etc.), Birth measurements

(weight, gestation, Apgar, etc.), Birth defect diagnostic


Demographic information (race/ethnicity, sex, etc.), Gravidity/parity






file/report filled out by staff at facility (laptop, web-based, etc.), Electronic


Database storage/management: Access, Mainframe

Data Analysis

Data analysis software: SAS, Access, Arc Map, JoinPoint



data sources, Data/hospital audits, Timeliness




Epidemiologic studies (using only program data), Needs assessment,


Prevention projects, Public Use Data Set

System Integration


System integration: The APORS program data is incorporated into a data

warehouse at the Illinois Department of Healthcare and Family Services.

Funding

Funding Source: 75% general state funds, 25% Service fees

Other

Web site: www.idph.state.il.us/about/epi/apors.htm

Surveillance reports on file: Surveillance reports are available on-line --

visit website listed above, as are public use data sets.

Contacts

Jane Fornoff, PhD

Illinois Department of Public Health

535 West Jefferson St, 3rd Floor

Springfield, IL 62761

Phone: 217-785-7133 Fax: 217-524-1770


Tiefu Shen, MD, PhD

Illinois Department of Public Health

535 West Jefferson St, 3rd Floor

Springfield, IL 62761

Phone: 217-785-1873 Fax: 217-524-1770




Indiana

Indiana Birth Defects & Problems Registry (IBDPR)

Purpose: Surveillance, Research, Referral to Services

Partner: Universities, Hospitals, Early Childhood Prevention Programs,

Advocacy Groups, Legislators


Start year: 2002

Earliest year of available data: 2003 birth data is available in 2006


(Epidemiology/Environment), Department of Health (Maternal and Child

Health), Department of Health (State Health Data Center)


Statewide: Yes

Current legislation or rule: IC 16-38-4-7, Rule 410 IAC 21-3


Case Definition

Outcomes covered: ICD-9-CM Codes 740-759.9, Fetal Alcohol Spectrum

Disorder (760.71), Pervasive Developmental Disorder (299.0), fetal

deaths, metabolic disorders & hearing loss from newborn screening,

selected neoplasms, congenital blood disorders, and certain eye disorders.


Age: up to 5 years (FAS, autism); up to 3 years for all other birth defects

Residence: In- and out-of-state (as reported to IBDPR) births to state

residents



ascertainment, Hospital based


file



Delivery hospitals: Disease index or discharge index, Chart audits of 45

targeted birth defects


Chart audits of 45 targeted birth defects



Case Ascertainment



codes outside 740-759



Coding: ICD-9-CM, and BPA

Data Collected













(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 storage/management: Oracle

Data Analysis

Data analysis software: SAS, Oracle and ArcView GIS



data sources, Data/hospital audits, Clinical review, Timeliness



cluster investigation, Needs assessment

System Integration



System integration: The database is linked with birth, death, newborn

hearing screening, and newborn metabolic screening data.

Funding

Funding Source: 20% MCH funds, 80% From the IBDPR fund obtained

through birth certificate sales.

Other

Web site: www.birthdefects.in.gov

Contacts

Eileen White MPH, BSN, RN

Indiana State Department of Health

2 North Meridian Street, 2 - Epidemiology

Indianapolis, IN 46204

Phone: 317-234-8149 Fax: 317-234-2995


Robert Bowman, MS, MA

Indiana State Department of Health

2 North Meridian Street, 7F

Indianapolis, IN 46204

Phone: 317-233-1231 Fax: 317-234-2995




Iowa

Iowa Registry For Congenital And Inherited Disorders (IRCID)


Prevention/Intervention, Prevention education programs


Environmental Agencies/Organizations, Advocacy Groups, Legislators


Start year: 1983


Organizational location: University

Population covered annually: 37,831 average 10 year

Statewide: Yes

Current legislation or rule: Iowa Code 136A, Iowa Administrative Code

641-4.7

Legislation year enacted: 1986; Revised 2001, 2003, 2004, 2009, 2013

Case Definition

Outcomes covered: major birth defects, Duchenne/Becker, congenital,

distal, Emery-Dreifuss, fascioscapulohumeral, limb-girdle, myotonic, and

oculopharyngeal muscular dystrophies, fetal deaths with and without birth

defects, newborn screening disorders




Age: 1 year

Residence: maternal residence in Iowa at time of delivery




certificates, Fetal Death Evaluation Protocol


Development Disabilities Surveillance, Cancer registry, AIDS/HIV

registry, Iowa Perinatal Care Program


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


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 sources: Physician reports, Outpatient surgery facilities

Case Ascertainment



codes outside 740-759, Any chart with a CDC/BPA code, Any chart with

selected procedure codes, Any chart with selected defects or medical



neonatal deaths, All elective abortions, All prenatal diagnosed or

suspected cases, muscular dystrophy



CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU

condition (e.g. recurrent infections), Cardiovascular condition, All infant

deaths (excluding prematurity), Ocular conditions, Auditory/hearing

conditions, Any infant with a codeable defect


Data Collected














Database storage/management: Access, Oracle, PC server

Data Analysis

Data analysis software: SPSS, SAS, Access, Oracle







Capture-recapture analyses, Observed vs. expected analyses,




Prevention projects

System Integration

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

environmental databases. For specific studies, data may be linked with

environmental databases or other state databases.

Funding


Contacts

Paul A. Romitti, Ph.D.

Iowa Registry for Congenital and Inherited Disorders

UI Research Park 100 BVC Room W245-G

Iowa City, IA 52242-5000

Phone: 319-384-1549

Fax: 319-353-4095




Kansas

Birth Defects Information System (BDIS)

Purpose: Registry

Partner: Hospitals


Start year: 1985



(Epidemiology/Environment), Department of Health (Vital Statistics),

Department of Health (Maternal and Child Health)

Population covered annually: 39,628 (Year 2011)

Statewide: Yes

Current legislation or rule: K.S.A. 65-1,241 through 65-1,246


Case Definition

Outcomes 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 and low Apgar scores

are also reported to BDIS.


Fetal deaths - stillbirths, spontaneous abortions, etc. (greater than 350

grams)

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






program


Case Ascertainment

Coding: ICD-9-CM

Data Collected



measurements (weight, gestation, Apgar, etc.)










(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 storage/management: Access, SQL Server

Data Analysis


Quality assurance: Comparison/verification between multiple data

sources, Office of Vital Statistics conducts verification on live birth and

stillbirth (fetal death) certificate data.



cluster investigation, Time trends, Grant proposals, ad-hoc upon request

System Integration

System 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.

Funding


Other

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

Contacts

Jamie S. Kim, MPH

Kansas Department of Health & Environment

1000 SW Jackson, Suite 220

Topeka, KS 66612-1274

Phone: 785-296-6467 Fax: 785-296-6553


Jamey D. Kendall, RN, BSN

Kansas Department of Health & Environment

1000 SW Jackson, Suite 220

Topeka, KS 66612-1274

Phone: 785-291-3363 Fax: 785-296-6553




Kentucky

Kentucky Birth Surveillance Registry (KBSR)


Prevention/Intervention, Prevention of birth defects



Programs, Advocacy Groups, Legislators


Start year: 1996



Health), Department for Public Health, Division of Maternal and Child

Health, Early Childhood Development Branch


Statewide: Yes

Current legislation or rule: KRS 211.651-211.670


Case Definition

Outcomes covered: major birth defects, genetic diseases, fetal mortality



and greater, 20 weeks or 350 grams)

Age: up to fifth birthday

Residence: all in-state births; out of state births to state residents



ascertainment


file, Fetal death certificates, medical laboratory reporting mandated;

outpatient reporting voluntary



program


summaries, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or

charts, Specialty outpatient clinics, laboratory records


Discharge summaries, ICU/NICU logs or charts, laboratory records



Other sources: Physician reports, local health departments

Case Ascertainment





certificate with a birth defect box checked



seizure), Cardiovascular condition, Any infant with a codeable defect

Coding: ICD-9-CM, ICD-10 for Vital Statistics death data

Data Collected














agencies (hospitals, etc.)


Data Analysis

Data analysis software: SAS, Access, Link Plus

Quality assurance: Re-abstraction of cases, Double-checking of assigned

codes, Comparison/verification between multiple data sources,

Data/hospital audits, Clinical review, Timeliness







Prevention projects, IRB-approved research projects

System Integration


System integration: True positives identified by newborn screening are

integrated into the KBSR database.

Funding

Funding Source: 40% general state funds, 60% Service fees

Other

Web site: http://chfs.ky.gov/dph/ach/ecd/kbsr.htm

Contacts

Monica Clouse, MPH

Kentucky Department for Public Health

275 East Main Street, HS2W-A

Frankfort, KY 40621

Phone: 502-564-4830 x4394 Fax: 502-564-8389


Troi J Cunningham, RN

Kentucky Department for Public Health

275 East Main Street, HS 2WC

Frankfort, KY 40621

Phone: 502-564-3756 x3779 Fax: 502-564-8389




Louisiana

Louisiana Birth Defects Monitoring Network (LBDMN)





Programs, Advocacy Groups


Start year: 2005


Organizational location: Department of Health Title V CYSHCN

Programs

Population covered annually: approx. 61,000 (2009)

Statewide: Yes

Current legislation or rule: Law: LA R.S. 40:31.41 - 40:31.48, 2001.

DHH Rule: LAC 48:V.Chapters 161 and 163


Case Definition

Outcomes covered: major structural birth defects and selected genetic

diseases

Pregnancy outcome: Live Births (≥ 20 weeks or ≥ 350 grams)

Age: up to three years old

Residence: in- and out-of-state births to state residents




Vital Records: Birth certificates, Matched birth/death file


summaries, ICU/NICU logs or charts


Discharge summaries, ICU/NICU logs or charts

Case Ascertainment


an ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM

codes outside 740-759




Data Collected



measurements (weight, gestation, Apgar score, etc.), Tests and

procedures, Infant complications, Birth defect diagnostic information









(laptop, web-based, etc.), Electronic scanning of printed records, Hand-

written, printed forms phased out in 2011.

Database storage/management: Access, Excel, InfoPath/SharePoint

stored in SQL

Data Analysis

Data analysis software: SAS, Access, GIS

Quality assurance: Validity checks, Re-abstraction of cases,

Comparison/verification between multiple data sources, Timeliness



variables, Time trends, Education/public awareness, Prevention projects

System Integration

System links: Link case finding data to final birth file, link case finding

data to infant death file

System integration: Integration with Louisiana Electronic Event

Registration System (LEERS) birth and death records will be completed

by January 2014.

Funding

Funding Source: 28% CDC grant, 72% Title V CSHCN funds

Other

Web site: www.dhh.la.gov/lbdmn

Surveillance reports on file: Louisiana Morbidity Report, May-June

2009, Vol 20, No 3; Results from Louisiana 2006-2008 Birth Defects

Surveillance System, A poster presented at 2013 NBDPN Annual

Meeting in Atlanta; 2005-2008 linked birth defects and birth records data;

Maps of 12 major birth defects by region and parish created by EPHT

using 2006-2008 linked birth defects and birth records data

Additional information on file: Advisory Board Documentation

Comments:

http://wwwprd.doa.louisiana.gov/boardsandcommissions/viewBoard.cfm

?board=192

Contacts

Dionka C. Pierce, MPH,

DHH / OPH / CSHS

1450 Poydras St., Ste 1950

New Orleans, LA 70112

Phone: 504-568-5629 Fax: 504-568-7529


Julie Johnston, BS

DHH / OPH / LBDMN

1450 Poydras St., Ste 1950

New Orleans, LA, 70112

Phone: 225-925-7222 Fax: 225-925-7245




Maine

Maine CDC Birth Defects Program (MBDP)


Prevention/Intervention, Education

Partner: Universities, Hospitals, Community Nursing Services,


Programs, Advocacy Groups, March of Dimes, New Hampshire Birth

Conditions Program


Start year: 1999


Organizational location: Department of Health (Division of Population

Health/MCH Unit/CSHN)

Population covered annually: 12, 593

Statewide: Yes

Current legislation or rule: 22 MRSA c. 1687


Case Definition

Outcomes covered: Selected major birth defects: NTD, clefts,

gastroschisis, omphalocele, trisomy 21, reduction deformities of upper

and lower limb, hypospadias and major heart defects



and greater, prenatally diagnosed at any gestation), Elective Terminations

(prenatally diagnosed at any gestation)

Age: Through age one

Residence: All in-state births to Maine residents



Passive case ascertainment with active case confirmation


file, Fetal death certificates



program




Surgery logs, Specialty outpatient clinics



Postmortem/pathology logs, Surgery logs, Laboratory logs, Specialty

outpatient clinics





Other sources: Physician reports, Children with Special Health Needs

Case Ascertainment





neonatal deaths, All infants in NICU or special care nursery, All prenatal

diagnosed or suspected cases

Conditions warranting chart review beyond the newborn period:

Cardiovascular condition, All infant deaths (excluding prematurity), Any



Data Collected













Electronic file/report submitted by other agencies (hospitals, etc.),

Electronic scanning of printed records

Database storage/management: Oracle, Microsoft SQL Server

Data Analysis

Data analysis software: SAS, Stat-exact





Rates by demographic and other variables, Needs assessment, Service

delivery, Referral, Grant proposals, Education/public awareness,

Prevention projects

System Integration



System integration: Newborn Hearing/ Newborn Bloodspot Screening

Programs

Funding

Funding Source: 85% MCH funds, 15% Maine Environmental Public

Health Tracking grant

Other

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

Contacts

Toni G. Wall, MPA

Department of Health & Human Services

11 State House Station, 286 Water St.-7th floor

Augusta, ME 04333

Phone: 207-287-5350 Fax: 207-287-5355


Diane C. Haberman, MSW, LCSW

Department of Health & Human Services

11 State House Station, 286 Water St. 7th floor

Augusta, ME 04333

Phone: 207-287-8424 Fax: 207-287-5355




Maryland

Maryland Birth Defects Reporting and Information System (BDRIS)

Purpose: Surveillance, Referral to Services





Start year: 1983



(Epidemiology/Environment), Department of Health (Prevention and

Health Promotion Administration)


Statewide: Yes

Current legislation or rule: Health-General Article, Section 18-206;

Annotated Code of Maryland


Case Definition

Outcomes 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



and greater, or ≥ 500 grams weight; reports accepted on fetal deaths <500

grams or <20 weeks gestation if sent to us); reports accepted on

terminations <500 grams or <20 weeks gestation if sent to us; BDRIS has

no specific legal authority to collect information on terminations.

Maryland does not require that any certificate be filed with Vital Records

for a termination unless the body is transported for burial.

Age: Newborn

Residence: all in-state births







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


Case Ascertainment

Conditions warranting chart review in newborn period: All fetal death

certificates

Coding: ICD-9-CM

Data Collected














reporting began 5/1/13

Database storage/management: Access, Mainframe, Visual dBASE,

SAS, ASCII files; as of 5/1/13 data stored on vendor server

Data Analysis



Comparison/verification between multiple data sources



variables, 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.

Funding


Other

Web site: http://phpa.dhmh.maryland.gov/genetics/SitePages/bdris.aspx

Surveillance reports on file: All reports submitted to CDC

Contacts

Debbie Badawi, MD

Maryland Dept. of Health & Mental Hygiene

201 W. Preston Street, Room 424

Baltimore, MD 21201

Phone: 410-767-6625 Fax: 443-333-7956


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




Massachusetts

Birth Defects Monitoring Program, Massachusetts Center For Birth Defects Research And Prevention, Massachusetts Department Of Public Health

(MBDMP)


Partner: Universities, Hospitals, Environmental Agencies/Organizations,

Early Childhood Prevention Programs, Advocacy Groups


Start year: 1997

Earliest year of available data: 1999 for statewide data

Organizational location: Department of Public Health (Bureau of Family

Health and Nutrition)


Statewide: Yes

Current legislation or rule: Massachusetts General Laws, Chapter 111,

Section 67E. In 2002 the Massachusetts Legislature amended this statute,

expanding the birth defects monitoring program. Regulations (105 CMR

302.000) were promulgated on February 6, 2009.


Case Definition

Outcomes covered: Major structural birth defects and chromosomal

anomalies of medical, surgical or cosmetic significance


Fetal deaths - stillbirths, spontaneous abortions, etc. (Reportable fetal

deaths: ≥20 weeks gestation or ≥350 grams)

Age: Up to one year

Residence: In and out-of-state births to state residents





certificates

Delivery hospitals: Disease index or discharge index, Obstetrics logs (i.e.,

labor & delivery), Regular nursery logs, ICU/NICU logs or charts,

Postmortem/pathology logs


ICU/NICU logs or charts, Postmortem/pathology logs, Specialty

outpatient clinics

Case Ascertainment





infants, All neonatal deaths


dysmorphism or abnormal facies, Failure to thrive, GI condition (e.g.

recurrent blockage), Ocular conditions, Cardiovascular condition, All

infant deaths (excluding prematurity), Auditory/hearing conditions, Any



Data Collected














file/report submitted by other agencies (hospitals, etc.), Electronic

scanning of printed records, Data from Confidential Reporting and

Abstracting Form is entered into electronic surveillance database based

on paper or electronic records (laptops).


Data Analysis

Data analysis software: SAS, Access, Excel









potential cases for other epidemiologic studies, Needs assessment, Grant

proposals, Education/public awareness, 1) selected cases from

surveillance are eligible for CDCs National Birth Defects Prevention

Study 2) contributed data to other surveillance research projects

System Integration

System links: 1) link case finding data to final birth file, 2) Link case

finding data to final fetal death file, 3) Massachusetts Pregnancy to Early

Life Longitudinal (PELL) Data System

Funding

Funding Source: 28% general state funds, 72% MCH funds

Other

Web site: http://www.mass.gov/dph/birthdefects

Surveillance reports on file: go to http://www.mass.gov/dph/birthdefects

to view or download annual surveillance reports.

Contacts

Marlene Anderka, ScD, MPH

Massachusetts Department of Public Health

5th Floor, 250 Washington Street

Boston, MA 02108-4619

Phone: 617-624-6045 Fax: 617-624-5574


Cathy Higgins, BA

Massachusetts Department of Public Health

5th Floor, 250 Washington Street

Boston, MA 02108-4619

Phone: 617-624-5510 Fax: 617-624-5574




Michigan

Michigan Birth Defects Registry (MBDR)


Prevention/Intervention, prevalence and mortality statistics


Childhood Prevention Programs, Advocacy Groups, Legislators


Start year: 1992


Organizational location: Department of Health (Vital Statistics)


Statewide: Yes

Current legislation or rule: Public Act 236 of 1988


Case Definition

Outcomes covered: Congenital anomalies, certain infectious diseases,

conditions caused by maternal exposures and other diseases of major

organ systems


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


Case ascertainment: Passive case ascertainment, Combination of active

and passive case ascertainment, Population based


file, Fetal death certificates, Fetal deaths since 2004 only



program, Cancer registry

Delivery hospitals: Disease index or discharge index, Specialty outpatient

clinics


Specialty outpatient clinics

Third party payers: Medicaid databases, CSHCS



Case Ascertainment


a selected list of ICD9-CM codes outside 740-759, Any chart with

selected defects or medical conditions (e.g., abnormal facies, congenital

heart disease), Any birth certificate with a birth defect box checked



seizure), GI condition (e.g., recurrent blockage), GU condition (e.g.,

recurrent infections), Cardiovascular condition, All infant deaths

(excluding prematurity), Childhood deaths between 1 and 6, Ocular

conditions, Auditory/hearing conditions, Any infant with a codeable

defect

Coding: ICD-9-CM

Data Collected
















Electronic Birth Certificate birth defects reporting module

Database storage/management: Fox-pro

Data Analysis

Data analysis software: SPSS, Access, Fox-pro, Excel



data sources, Data/hospital audits, Timeliness



cluster investigation, Time trends, Observed vs. expected analyses,



Service delivery, Referral, Grant proposals, Education/public awareness

System Integration


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.

Funding

Funding Source: 10% Service fees, 90% Vital Records Fees

Other

Web site: http://www.michigan.gov/mdch/0,1607,7-132-2944_4670---

,00.html

Additional information on file:

http://www.michigan.gov/mdch/0,1607,7-132-2945_5221-16665--

,00.html

Contacts

Glenn Edward Copeland, MBA

Michigan Birth Defects Registry

201 Townsend

Lansing, MI 48913

Phone: 517-335-8677 Fax: 517-335-8711


Lorrie Simmons, RHIT

Michigan Dept. of Community Health

201 Townsend

Lansing, MI 48913

Phone: 517-335-9197 Fax: 517-335-8711




Minnesota

Minnesota Birth Defects Information System (BDIS)







Start year: 2005


Organizational location: Department of Health (Community & Family

Health)


Statewide: No, Prevalence estimates are available for the two largest

counties in Minnesota, Hennepin and Ramsey counties, which account for

just under 50% of MN births. The surveillance system has been gradually

expanding and is currently covering about 82% of live births. Statewide

surveillance is expected to be completed by the end of 2013.

Current legislation or rule: MS 144.2215-2219


Case Definition

Outcomes covered: Major structural and genetic defects diagnosed up to

1 year of age identified by CDC and NBDPN


Age: up to 1 year after delivery

Residence: In-state and out of state births to state residents


Case ascertainment: Active case ascertainment, Combination of active

and passive case ascertainment, Population based


file


Newborn metabolic screening program; Beginning in 2013, newborn

CCHD screening program


summaries, Specialty outpatient clinics




Other sources: Statewide de-identified hospital discharge dataset

Case Ascertainment




certificate with a birth defect box checked. Starting with 2009 births, all

deaths prior to age 2 with a birth defect indicated as cause of death on

death certificates


Data Collected









Father: Family history



(laptop, web-based, etc.), Electronic file/report filled out by staff off-site

using remote access to EMRs or PDF files of EMRs.

Database storage/management: Web-based department-wide integrated

disease surveillance database. Maven platform by Consilience Software.

Data Analysis



checking of assigned codes, Data/hospital audits, Clinical review,

Timeliness, Physician review as needed



variables, Identification of potential cases for other epidemiologic studies,

Needs assessment, Referral, Grant proposals, Education/public

awareness, Prevention projects, Collaboration with Environmental Public

Health Tracking Program. Additional analyses will be conducted when

sufficient data are available. Surveillance should be statewide by the end

of 2013.

System Integration


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

the birth defects database to view relevant case information. In 2012,

LPH began entering follow up and service/program updates into BDIS.

System integration: BDIS is integrated with Newborn Hearing program.

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 2013 as universal newborn CCHD

screening is implemented.

Funding


Other

Web site: http://www.health.state.mn.us/birthdefects

Additional information on file: Folic Acid Guidelines for physicians

Contacts

Sook 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


Kristin Oehlke, MS, CGC

Minnesota Department of Health

85 East 7th Place, PO Box 64882

St. Paul, MN 55164

Phone: 651-201-3648 Fax: 651-201-3590




Mississippi

Mississippi Birth Defects Surveillance Registry (BDRS)

Purpose: Surveillance

Partner: Local Health Departments, Hospitals, Title V Children with

Special Health Care Needs


Start year: 2000



Health), Department of Health (Genetic Services Bureau)


Statewide: Yes

Current legislation or rule: Section 41-21-205 of the Mississippi Code of

1972


Case Definition

Outcomes covered: Live births and reportable fetal deaths with birth

defects (fetal death of 20 completed weeks of gestation or more, or a

weight of 350 grams or more) shall be reported.



and greater, or 350 grams or more)

Age: Birth to 21 years

Residence: in state and out of state births to residents



Vital Records: Birth certificates, Death certificates



program


summaries





Case Ascertainment

Coding: ICD-9-CM

Data Collected




information








Data Analysis

Data analysis software: SPSS, SAS, Access


Timeliness


Rates by demographic and other variables, Needs assessment,

Education/public awareness

Funding

Funding Source: 100% genetic screening revenues

Other

Web site: www.healthyms.com

Surveillance reports on file: Birth Defects Surveillance Report 2000-

2007

Contacts

Patricia Terry, MS

Mississippi State Dept. of Health

570 E. Woodrow Wilson Ave, Suite 200

Jackson, MS 39215-1700

Phone: 601-576-7619 Fax: 601-576-7498


Beryl Polk, PhD

Mississippi State Dept. of Health

570 E. Woodrow Wilson Ave, Suite 200

Jackson, MS 39215-1700

Phone: 601-576-7464 Fax: 601-576-7825




Missouri

Missouri Birth Defects Surveillance System


Partner: Environmental Agencies/Organizations, Legislators


Start year: 1985


Organizational location: Department of Health (Vital Statistics)


Statewide: Yes

Case Definition

Outcomes covered: ICD9 codes 740-759, plus genetic, metabolic, and

other disorders



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





Delivery hospitals: Discharge summaries

Pediatric & tertiary care hospitals: Discharge summaries, Specialty

outpatient clinics

Case Ascertainment

Coding: ICD-9-CM, ICD-10

Data Collected







Prenatal care, Pregnancy/delivery complications, Maternal risk factors







Database storage/management: SAS

Data Analysis





Rates by demographic and other variables, Time trends, Education/public

awareness

System Integration


Funding


Other

Web site: http://health.mo.gov/data/birthdefectsregistry/index.php

Surveillance reports on file: MO Birth Defects Report 1996-2000

Contacts

Chenghui Liao PhD

MO Dept of Health, Bureau of Vital Statistics

PO Box 570, 920 Wildwood drive

Jefferson City, MO 65102

Phone: 573-751-6299 Fax: 573-526-4102


Ray Shell

Missouri Dept of Health, Bureau of Vital Statistics

PO Box 570, 920 Wildwood

Jefferson City, MO 65102

Phone: 573-756-3801 Fax: 573-526-4102




Montana

Montana Birth Outcomes Monitoring System (MBOMS)

Purpose: Surveillance, Referral to Services

Partner: private practice physicians


Start year: 1999



Health)

Population covered annually: ~12,000

Statewide: Yes

Current legislation or rule: none

Case Definition

Outcomes covered: major structural birth defects, chromosomal

anomalies specified in the CDC 45 reportables for births occurring in

calendar years 2000 through 2004. Registry suspended beginning with

calendar year 2005 births due to loss of CDC funding.

Pregnancy outcome: all gestational ages

Funding

Funding Source: No funding available since 8/26/2005

Other

Comments: Due to lack of funding, Montana is no longer performing

active surveillance. Informal active/passive surveillance continues and

linkages between ascertainment and services are in place and supported.

Data and program linkages exist between newborn hearing screening,

birth certificates, and newborn screening.

Contacts

MaryLynn Donnelly, RN

Children's Special Health Services

Mt. Dept. of Public Health and Human Services

PO Box 202951

Helena, MT 59620-2951

Phone: 406-444-3620 Fax: 406-444-2790




Nebraska

Nebraska Birth Defects Registry

Purpose: Surveillance, We are in the process of exploring our policy on

expanding the use of the birth defects data

Partner: Hospitals, Early Childhood Prevention Programs, Nebraska

Department of Health and Human Services, Vital Statistics and MCH


Start year: 1973


Organizational location: Department of Health (Vital Statistics),

Department of Health (Nebraska Department of Health and Human

Services, Public Health, Office of Health Statistics)

Population covered annually: Statewide, 26,000 births annually

Statewide: Yes

Current legislation or rule: Laws 1972, LB 1203, §1, §2, §3, §4

(alternate citation: Public Health and Welfare [Codes] §71-645, §71-646,

§71-647, §71-648, §71-649)


Case Definition

Outcomes covered: All birth defects, exclusions according to CDC

exclusion list

Pregnancy outcome: Live Births (Greater than 20 weeks and greater than

500 grams), Fetal deaths - stillbirths, spontaneous abortions, etc. (20

weeks gestation and greater)

Age: Birth to 1 year

Residence: In-state and out-of-state births to state residents.


Case ascertainment: Passive case ascertainment


certificates




summaries, ICU/NICU logs or charts



clinics




Case Ascertainment

Conditions warranting chart review in newborn period: We are a

passive system and don't conduct chart reviews on any conditions in

newborn period and beyond the newborn period


Data Collected




information


Demographic information (race/ethnicity, sex, etc.), Gravidity/parity







Database storage/management: SQL

Data Analysis

Data analysis software: SAS, Reports from Netsmart.

Quality assurance: Re-abstraction of cases, Double-checking of assigned

codes, Comparison/verification between multiple data sources, Case

finding, data coding and entry.

Data use and analysis: Baseline rates, Monitoring outbreaks and cluster

investigation, Epidemiologic studies (using only program data),


assessment, Grant proposals, Incidence rates, trend analysis, birth defect

registry.

System Integration

System links: Birth

System integration: Integrated with births, fetal deaths, deaths and

hearing screening.

Funding


Other

Web site:

http://dhhs.ne.gov/publichealth/Pages/vitalrecords_partners.aspx

Surveillance reports on file:

http://dhhs.ne.gov/publichealth/Pages/ced_vs.aspx

Contacts

Michelle Hood

Nebraska Department of Health and Human Services

220 South 17th Street, 220 Building I 2

Lincoln, NE 68509-8914

Phone: 402-471-0147 Fax: 402-471-9728


Nila Irwin

Nebraska Department of Health and Human Services

1033 O Street, Suite 130

Lincoln, NE 68509-5026

Phone: 402-471-0354 Fax: 402-742-2388




Nevada

Nevada Birth Outcomes Monitoring System (NBOMS)



Partner: Hospitals, Early Childhood Prevention Programs, Legislators,

Bureau of Child, Family, & Community Wellness


Start year: 2000



Health), State Health Division, Office of Health Statistics and

Surveillance, Bureau of Health Statistics, Planning, Epidemiology and

Response

Population covered annually: About 35,000

Statewide: Yes

Current legislation or rule: NRS 442.300 - 442.330 - Birth Defects

Registry Legislation *** Regulation = NAC 442


Case Definition

Outcomes covered: Major birth defects and genetic diseases

Pregnancy outcome: Live Births (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



ascertainment, Population based, Hospital based


file, Fetal death certificates, hospital medical records,

diagnostic/laboratory reports


Newborn metabolic screening program, Cancer registry, AIDS/HIV

registry


summaries, Obstetrics logs (i.e., labor & delivery), Pediatric logs,

Postmortem/pathology logs, Surgery logs, Cardiac catheterization

laboratories, Specialty outpatient clinics


Discharge summaries



Case Ascertainment



codes outside 740-759, Any birth certificate with a birth defect box

checked




condition (e.g., recurrent infections), Cardiovascular condition, Any


Coding: ICD-9-CM

Data Collected







Prenatal care, Prenatal diagnostic information, Pregnancy/delivery




Family history


Data Collection: Printed abstract/report filled out by staff


Data Analysis


Quality assurance: Double-checking of assigned codes,

Comparison/verification between multiple data sources, Data/hospital

audits, Timeliness







Prevention projects

System Integration

System links: Link to other state registries/databases, Birth registry data is

manually linked to birth defect data, but the actual databases are not

linked.

Funding

Funding Source: 100% MCH Block Grant

Other


http://health.nv.gov/PUBLICATIONS/OHSS/2009_NBOMS_Annual_Re

port.pdf

Contacts

Prasanjit Chakma, 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

3811 W. Charleston Blvd., Ste. 205

Las Vegas, NV 89102

Phone: 702-486 -9855 Fax: 702-486-0490


Brad Towle, MA, MPA

Office of Health Statistics and Surveillance (OHSS), Bureau of Health

Statistics, Planning, Epidemiology and Response (BHSP&ER)

4150 Technology Way, Suite 200

Carson City, NV 89706

Phone: 775-684-4243




New Hampshire

New Hampshire Birth Conditions Program (NHBCP)







Start year: 2003



Health), Department of Health (Bureau of Special Medical Services:

Bureau of Nutrition and Health Promotion, Department of Environmental

Services Bureau of Environmental Health), University


Statewide: Yes

Current legislation or rule: RSA 141:J, NH Administrative Rules He-P

3012


Case Definition

Outcomes covered: all major birth defects and genetic diseases

recommended by the CDC/NBDPN




Age: Currently collecting birth to age 2

Residence: all New Hampshire residents, in-state and out-of-state



Vital Records: Birth certificates, Fetal death certificates, Elective

termination certificates, hospital ICD-9 codes for admissions, discharges

and transports, fetal pathology reviews at Dartmouth Hitchcock Medical

Center


Newborn hearing screening program

Delivery hospitals: Discharge summaries, Obstetrics logs (i.e., labor &

delivery), Regular nursery logs, ICU/NICU logs or charts,

Postmortem/pathology logs, Specialty outpatient clinics, medical records

abstraction of charts of selected ICD 9 Codes

Pediatric & tertiary care hospitals: Discharge summaries, ICU/NICU

logs or charts, Postmortem/pathology logs, Specialty outpatient clinics,

cytogenetics laboratory, perinatal pathology logs, Medical Genetics

Clinic files, molecular genetics laboratory, Prenatal Diagnosis Program

files



Case Ascertainment



codes outside 740-759, Any chart with a CDC/BPA code, Any chart with



infants, All neonatal deaths, All infants in NICU or special care nursery,

All prenatal diagnosed or suspected cases, elective terminations that have

confirmed birth conditions by autopsy or confirmed by clinical

assessment




Data Collected




information





Father: Identification information (name, address, date-of-birth, etc.)



file/report filled out by staff at facility (laptop, web-based, etc.)

Database storage/management: Oracle, AURIS, a web-based reporting

system currently utilized by the NH DHHS Newborn Hearing Screening

Program, has added a module to the currently operating system to meet

the birth defects tracking requirements.

Data Analysis

Data analysis software: SPSS, Access



data sources, Clinical review



variables, Observed vs. expected analyses, Epidemiologic studies (using

only program data), Service delivery, Grant proposals, Education/public

awareness, Prevention projects

System Integration


System integration: Integrated into the NH DHHS Newborn Hearing

Screening Program registry, a statewide universal hearing program for all

NH infants. This system also receives weekly uploads from the State's

Vital Records system that is then linked with the birth conditions and

newborn screening data. In addition, in 2011 the NH Birth Conditions

Program database was linked with the Title V program database with data

on children receiving Special Medical Services in NH.

Funding

Funding Source: 100% CDC grant

Other

Web site: www.nhbcp.org

Contacts

John B. Moeschler, MD, MS

Division of Genetics and Child Development, Dept. of Pediatrics,

Dartmouth Hitchcock Medical Center

1 Medical Center Drive

Lebanon, NH 03756

Phone: 603-653-6053 Fax: 603-650-8268


Stephanie D. Miller, RN, MSN, MPH

NH Birth Conditions Program, Dartmouth Medical School

1 Medical Center Drive

Lebanon, NH 03756

Phone: 603-653-3163 Fax: 603-653-0712




New Jersey

Special Child Health Services Registry (SCHS REGISTRY)





Childhood Prevention Programs, Advocacy Groups, Legislators,

Neurodevelopmental Centers; Federally Qualified Health Care Centers;

State Parent Advocacy Network


Start year: 1928


Organizational location: Department of Health - Special Child Health and

Early Intervention Services


Statewide: Yes

Current legislation or rule: NJSA 26:8-40.20 et seq., NJAC 8:20 -

Amended: 1990, 1991, 1992, 2005, Readopted: 2010, Rule Amendments

Adopted: 2009; Re-adopted 2010


Case Definition

Outcomes covered: All birth defects (structural, genetic, and biochemical),

all Autism Spectrum Disorders, and severe hyperbilirubinemia, are

required to be reported; all special needs and any condition which places a

child at risk (prematurity, asthma, cancer, developmental delay) are also

reported but not required.


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

Residence: all NJ residents, in and out of state




Vital Records: Birth and death certificates, Matched birth/death file



program, Autism Registry




Surgery logs, Cardiac catheterization laboratories, Specialty outpatient

clinics, quality assurance visit consisting of chart review of 3 month period



Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac

catheterization laboratories, 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 sources: Physician reports, Special Child Health Services county

based Case Management units, parents, medical examiners. Autism

diagnosticians and treatment centers.

Case Ascertainment


ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes

outside 740-759, All neonatal deaths, all death certificates for < 3 years old

Conditions warranting chart review beyond the newborn period: GI

condition (e.g., recurrent blockage), GU condition (e.g., recurrent

infections), Cardiovascular condition, All infant deaths (excluding

prematurity), Ocular conditions, Any infant with a codeable defect

Coding: ICD-9-CM

Data Collected



(weight, gestation, Apgar, etc.), Birth defect diagnostic information








file/report filled out by staff at facility (laptop, web-based, etc.), Electronic

file/report submitted by other agencies (hospitals, etc.), implementation of

a web-based reporting ongoing since July 1, 2009

Database storage/management: Mainframe, SAS; SQL

Data Analysis




audits, Clinical review, Timeliness, merge registry with birth certificate

registry and the death certificate registry



variables, Monitoring outbreaks and cluster investigation, 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 Integration


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 SCHS Registry.

Metabolic screening program provides direct report to SCHS Registry.

Autism Registry is included in the Registry.

Funding

Funding Source: 90% MCH funds, 10% CDC grant

Other

Web site: http://www.state.nj.us/health/fhs/sch/schr.shtml

Contacts

Leslie M. Beres-Sochka, MS, Hyg

SCHEIS, New Jersey Department of Health

PO Box 364

Trenton, NJ 08625-0364

Phone: 609-292-5676 Fax: 609-633-7820


Mary M. Knapp, MSN

New Jersey Department of Health

PO Box 364

Trenton, NJ 08625-0364

Phone: 609-292-5676 Fax: 609-633-7820




New Mexico

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




Early Childhood Prevention Programs, Advocacy Groups, Legislators,

Private providers


Start year: 1995



(Epidemiology/Environment), Department of Health (Maternal and Child

Health)


Statewide: Yes

Current legislation or rule: In January 2000, birth defects became a

reportable condition. These conditions are updated by the Office of

Epidemiology. This did not involve legislation, only a change in

regulations.

Legislation year enacted: January 1, 2000

Case Definition

Outcomes covered: 740-760.71, Currently focused on major birth defects

of interest to Environmental Public Health Tracking.




Age: birth through age 4 years

Residence: Births to New Mexico residents.




certificates



program

Delivery hospitals: Disease index or discharge index, medical chart

review


Specialty outpatient clinics, specialty outpatient clinics, including

neurosurgery, plastic surgery, pediatric surgical specialists, prenatal

diagnostic providers

Third party payers: Medicaid databases, Health maintenance

organization (HMOs), Indian health services, Children’s Medical

Services (CMS)


Cytogenetic laboratories


Case Ascertainment

Conditions warranting chart review in newborn period: Chart reviews

only done to clarify birth defect diagnosis identified through other means,

e.g., nonspecific diagnosis such as 749

Coding: CDC coding system based on BPA, ICD-9-CM, ICD10 for

deaths

Data Collected


etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect

diagnostic information






Database storage/management: Stata version 12.0

Data Analysis

Data analysis software: Stata version 12.0





cluster investigation, Grant proposals, Education/public awareness,

Prevention projects

System Integration


data to final birth file, Link to environmental databases, Link to death file

Funding

Funding Source: 100% CDC Environmental Public Health Tracking

grant. We are actively seeking resources to support this effort.

Other

Web site:

https://nmtracking.unm.edu/health_effects/birthdefects/about_birthdefects

Contacts

Heidi Krapfl, MS

NM Department of Health

1190 St. Francis Drive, Suite N1304

Santa Fe, NM 87502

Phone: 505-476-3577 Fax: 505-827-0013




New York

New York State Congenital Malformations Registry (CMR)


Prevention/Intervention, Community outreach and education


March Of Dimes


Start year: 1982




Population covered annually: 250,000 - 300,000

Statewide: Yes

Current legislation or rule: Public Health Law Art. 2, Title, II, Sect

225(5)(t) and Art. 2 Title I, sect 206(1)(j): Codes, Rules and

Regulations,Chap 1, State Sanitary Code, part 22.3


Case Definition

Outcomes covered: Major malformations - a detailed list is available

upon request


Age: 2 years

Residence: in-state and out-of-state birth to state resident; in-state birth to

nonresident; all children born in or residing in New York, up to age 2








clinics




catheterization laboratories, Specialty outpatient clinics

Other specialty facilities: Cytogenetic laboratories

Other sources: Physician reports, Cytogenetic laboratories

Case Ascertainment


an ICD9-CM code 740-759




Data Collected




information







(hospitals, etc.)

Database storage/management: Access, Sybase

Data Analysis

Data analysis software: SAS, Access, JAVA



audits, Timeliness



cluster investigation, 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, Needs assessment, Service delivery,


projects

System Integration


data to final birth file, Link to environmental databases

Funding

Funding 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), 9.3% State Superfund

Other

Web site:

http://www.health.state.ny.us/diseases/congenital_malformations/cmrhom

e.htm

Surveillance reports on file: Reports for 1983-2007

Contacts

Charlotte M Druschel MD, MPH

New York Department of Health

BEOE, ESP-Corning Tower, room 1203

Albany, NY 12237

Phone: 518-402-7771 Fax: 518-402-7769


Deborah J. Fox

New York Department of Health

BEOE, ESP-Corning Tower, room 1203

Albany, NY 12237

Phone: 518-402-7760 Fax: 518-402-7769




North Carolina

North Carolina Birth Defects Monitoring Program (NCBDMP)


Prevention/Intervention, Education, Advocacy





Start year: 1987


Organizational location: Department of Health (State Center for Health

Statistics)


Statewide: Yes

Current legislation or rule: NCGS 130A-131


Case Definition

Outcomes covered: major birth defects



and greater), Elective Terminations (All gestational ages)


Residence: NC resident births, in-state and out-of-state occurrence







summaries, Obstetrics logs (i.e., labor & delivery), Specialty outpatient

clinics



clinics



Genetic counseling/clinical genetics facilities

Case Ascertainment




birth certificate with a birth defect box checked, All stillborn infants, All

prenatal diagnosed or suspected cases




Data Collected















(hospitals, etc.)

Database storage/management: Access, Mainframe, SAS

Data Analysis

Data analysis software: SAS, Access, Various software for spatial

analyses









potential cases for other epidemiologic studies, Service delivery, Referral,

Grant proposals, Education/public awareness, Prevention projects,

advocacy

System Integration


data to final birth file, Link to environmental databases, Vital Statistics,

Medicaid Paid Claims, MCH Program Data

Funding

Funding Source: 95% General state funds, 5% CDC grant

Other

Web site: http://www.schs.state.nc.us/SCHS/bdmp/

Contacts

Robert E. Meyer, PhD

North Carolina Center for Health Statistics

1908 Mail Service Center

Raleigh, NC 27699-1908

Phone: 919.733.4728 Fax: 919.715.4489


Jennifer Stock

North Carolina Center for Health Statistics

1908 Mail Service Center

Raleigh, NC 27699-1908

Phone: 919.715.0263 Fax: 919.715.4489




North Dakota

North Dakota Birth Defects Monitoring System (NDBDMS)


Partner: Universities, March of Dimes, Department of Human Services


Start year: 2002



Department of Health (Maternal and Child Health), Department of Health

(Children's Special Health Services)


Statewide: Yes

Current legislation or rule: North Dakota Century code 23-41


Case Definition

Outcomes covered: selected birth defects (NTDs, congenital heart

defects, cleft lip and palate, chromosomal anomalies) and other risk

factors that may lead to health and developmental problems


Numbers collected and reported via Vital Records), Fetal deaths -

stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater,

numbers collected and reported via Vital Records), Elective Terminations

(less than 20 week gestation, 20 weeks gestation and greater, Numbers

collected and reported via Vital Records)

Age: Newborn period

Residence: In-state resident births and out of state birth receiving services

in ND







program, Cancer registry, AIDS/HIV registry, FAS

Delivery hospitals: Birth certificate completion

Pediatric & tertiary care hospitals: Specialty outpatient clinics




Case Ascertainment





Coding: ICD-9-CM, ICD 10

Data Collected















Database storage/management: Access, Mainframe, DB2, SPSS, Excel

Data Analysis

Data analysis software: SPSS, Access


Comparison/verification between multiple data sources, Clinical review


Rates by demographic and other variables, Time trends, Epidemiologic


Referral, Grant proposals, Education/public awareness

System Integration


System integration: The program/system/registry is integrated with birth,

death, fetal death, Medicaid claims payment, Children with Special

Healthcare Needs databases and genetics program data from the Division

of Medical Genetics at the University of North Dakota School of

Medicine and Health Sciences .

Funding

Funding Source: 100% From the State System Development

Initiative(SSDI) Grant

Other

Web site: http://www.ndhealth.gov/cshs/

Surveillance reports on file: North Dakota Birth Defects Monitoring

System -Summary Report 2001-2005

Contacts

Devaiah Muccatira, MS

ND Department of Health

Children’s Special Health Services Division

600 East Boulevard Avenue, Dept. 301

Bismarck, ND 58505-0200

Phone: 701-328-4963 Fax: 701-328-1645


Tamara Lynn Gallup-Millner, RN, MPA

ND Department of Health, Children’s Special Health Services Division

600 East Boulevard Avenue, Dept. 301

Bismarck, ND 58505-0200

Phone: 701-328-4814 Fax: 701-328-1645




Ohio

Ohio Connections For Children With Special Needs (OCCSN)





Programs, Advocacy Groups, Legislators, NIOSH, Title V CSHCN, Ohio

Hospital Association


Start year: 2006



Health)


Statewide: Yes

Current legislation or rule: Ohio Revised Code (ORC) 3705.30 - 3705.36,

signed into law in July, 2000.

"The Director of Health shall establish and, if funds for this purpose are

available, implement a statewide birth defects information system for the

collection of information concerning congenital anomalies, stillbirths, and

abnormal conditions of newborns." Ohio Administrative Code (OAC)

3701-57-01 to 3701-57-04.revised 2010


Case Definition

Outcomes covered: Major birth defects recommended by NBDPN,

disorders on state newborn bloodspot panel, disorders related to infant

hearing loss



and greater)

Age: Up to 5 years of age

Residence: Ohio children 0 to 5 years of age seen for medical care at a

hospital in Ohio; all in and out of state births and fetal deaths to state

residents


Case ascertainment: Passive case ascertainment, and passive case

ascertainment with follow-up for certain disorders.


file, Fetal death certificates (20 weeks gestation and greater)


Newborn metabolic screening program, Title V CSHCN Program data,

Genetics Program Data System, Part C Early Intervention System Data,

Newborn Bloodspot Screening Data

Delivery hospitals: Hospital data for medical records and billing

Pediatric & tertiary care hospitals: Hospital data for medical records and

billing


Case Ascertainment

Conditions warranting chart review in newborn period: Any birth

certificate with a birth defect box checked, ICD-9-CM, ICD-10 (death

certificates), or named congenital anomaly

Coding: ICD-9-CM

Data Collected









(hospitals, etc.), Reporting hospitals upload CSV flat file to secure

website for integration. Low volume reporters can manually key data into

user interface on secure internet site.

Database storage/management: SQL 2008 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 (follow-up)

Data Analysis

Data analysis software: SAS, MS Excel, FRIL


multiple data sources, Clinical review, Timeliness


program evaluation, Baseline rates, Observed vs. expected analyses,

Epidemiologic studies (using only program data), Referral, Grant

proposals, Education/public awareness, Prevention projects, IRB

approved research projects

System Integration


System integration: OCCSN data system shares common demographic

file with Vital Statistics and Genetics Program data system

Funding


Other

Web site:

http://www.odh.ohio.gov/odhPrograms/cmh/bdefects/birthdefects1.aspx

Contacts

Anna Starr, BS

Ohio Department of Health

246 N. High Street

Columbus, OH 43216-0118

Phone: 614-995-5333 Fax: 614-728-9163


Norma Ryan, PhD

Ohio Dept. of Health

246 N. High Street

Columbus, OH 43215

Phone: 614-752-9523 Fax: 614-564-2504


Richard Thomas, MPH

Ohio Department of Health

246 N. High Street

Columbus, OH 43215

Phone: 614-466-0269




Oklahoma

Oklahoma Birth Defects Registry (OBDR)




Childhood Prevention Programs, Advocacy Groups, Legislators,

Cytogenetics/ & Medical Genetics


Start year: 1992; statewide 1994

Earliest year of available data: 1992; 1994 statewide

Organizational location: Department of Health (Prevention and

Preparedness)


Statewide: Yes

Current legislation or rule: 63 O.S. Section 1-550.2


Case Definition

Outcomes covered: modified 6-digit ICD-9-CM codes for birth defects

and genetic diseases (CDC/BPA)

Pregnancy outcome: Live Births (≥ 20 weeks gestation), Fetal deaths -

stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater),

Elective Terminations (20 weeks gestation and greater)

Age: 2 years

Residence: in-state births to state residents




certificates





ICU/NICU logs or charts, Pediatric logs, Surgery logs, Specialty

outpatient clinics


Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery

logs, Specialty outpatient clinics

Third party payers: Indian health services, military hospitals delivering

babies



Case Ascertainment



codes outside 740-759, Any chart with a CDC/BPA code




Data Collected




information










Data Analysis

Data analysis software: SAS, Access, ArcView GIS


checking of assigned codes, Timeliness, editing of all completed abstracts



cluster investigation, Time trends, Time-space cluster analyses, Needs

assessment, Referral, Grant proposals, Education/public awareness,

Prevention projects, program quality assurance

Funding

Funding Source: 13% General state funds, 57% MC funds, 30% CDC

grant

Other

Web site:

http://www.ok.gov/health/Child_and_Family_Health/Screening,_and_Spe

cial_Services/

Contacts

Sharon Vaz, MS

Oklahoma State Department of Health

Screening and Special Services

1000 NE 10th Street, Room 709

Oklahoma City, OK 73117-1299

Phone: 405-271-6617 Fax: 405-271-4892




Oregon

Birth Anomalies Registry (BAR)


Partner: Environmental Agencies/Organizations, Advocacy Groups,

Legislators


Start year: 2013

Earliest year of available data: None yet ready for publication

Organizational location: Public Health Division (Maternal and Child

Health)


Statewide: Yes

Current legislation or rule: None

Case Definition

Outcomes covered: EPHT-12


Age: 0-1 years now

Residence: In-state births to state residents


Case ascertainment: Link birth certificate to hospital discharge dataset


Delivery hospitals: Hospital Discharge Dataset

Pediatric & tertiary care hospitals: Hospital Discharge Dataset

Third party payers: Medicaid data

Case Ascertainment

Conditions warranting chart review in newborn period: None at this

point; undecided regarding future expanded list of anomalies


Data Collected

Infant/fetus: Birth defect diagnostic information



Illnesses/conditions, Prenatal care



Data Analysis

Data analysis software: SPSS

Data use and analysis: Routine statistical monitoring at this point

System Integration

System links: Link to other state databases

Funding

Funding Source: Environmental Public Health Tracking (EPHT), Title V

from Maternal and Child Health Bureau.

Contacts

Suzanne Zane, DVM

Maternal & Child Health Epidemiologist

Birth Anomalies Registry, Maternal and Child Health Section

Center for Prevention and Health Promotion

Oregon Public Health Division

800 NE Oregon Street, Suite 850

Portland, OR 97232

Phone: 971-673-0559 Fax: 971-673-0240


Pennsylvania

Pennsylvania Birth Defects Surveillance Database




Population covered annually: 142,370 total live births in 2001; 142,388

total live births in 2002; 145,952 total live births in 2003; 144,499 total

live births in 2004.

Statewide: Yes

Data Collected

Mother: Maternal risk factors

Contacts

Luann Cartwright

PA Department of Health, Bureau of Family Health

615 Forster Street, Health & Welfare Bldg. 7th Floor East

Harrisburg, PA 17120

Phone: 717.783.8143 Fax: 717.772.0323




Puerto Rico

Puerto Rico Birth Defects Surveillance and Prevention System (PRBDSS)





Groups


Start year: 1995



Health)


Statewide: Yes

Current legislation or rule: Yes, Law 351

Legislation year enacted: September 16th, 2004

Case Definition

Outcomes covered: Selected birth defects - neural tube defects, cleft lip

and/or cleft palate, talipes equinovarus, limb defects, ventral wall defects,

ambiguous genitalia, trisomy 13, 18 and 21, albinism, congenital heart

defects, hipos/epispadias, Jarcho-Levin syndrome, anotia, microtia,

anophthalmia, microphthalmia and bladder extrophy.




Age: up to 6 years after delivery

Residence: in-state birth to state residents







program

Delivery hospitals: 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: Discharge summaries, ICU/NICU

logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs,

Laboratory logs

Third party payers: Medicaid databases, Health maintenance

organization (HMOs)


Cytogenetic laboratories


Case Ascertainment





congenital heart disease), Any birth certificate with a birth defect box

checked, All stillborn infants, All neonatal deaths, All elective abortions,

All infants in NICU or special care nursery, All prenatal diagnosed or

suspected cases



condition, All infant deaths (excluding prematurity), Ocular conditions,

Auditory/hearing conditions, Any infant with a codeable defect

Coding: ICD-9-CM

Data Collected







Prenatal diagnostic information





abstract/report submitted by other agencies (hospitals, etc.)


Data Analysis

Data analysis software: SPSS







Time-space cluster 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

Funding

Funding Source: 70% MCH funds, 30% CDC grant

Other

Web site: http://www.salud.gov.pr

Surveillance reports on file: PR Birth Defects Datebook 2012

Contacts

Mónica R. Castellano Vega, MS

Puerto Rico Birth Defects Surveillance and Prevention System

PR Department of Health

PO Box 70184

San Juan, PR 00936

Phone: 787-765-2929 X-4571 Fax: 787-764-4259


Manuel Vargas-Bernal MD, MPH

Maternal, Child and Adolescent Division

PR Department of Health

PO Box 70184

San Juan, PR 00936

Phone: 787-765-2929 X-4582/4583 Fax: 787-764-4259




Rhode Island

Rhode Island Birth Defects Program



Partner: Universities, Hospitals, Community Nursing Services,


Programs, Advocacy Groups, families


Start year: 2000


Organizational location: Department of Health (Center for Health Data

and Analysis)


Statewide: Yes

Current 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.


Case Definition

Outcomes covered: All birth defects and genetic diseases



and greater), Elective Terminations (20 weeks gestation and greater)

Age: Birth-4 years

Residence: RI residents



ascertainment

Vital Records: Birth and death certificates, Matched birth/death file



program, RI has an integrated child health information system called

KIDSNET, which links data from 9 programs including: Newborn

Developmental Risk Screening; Universal Newborn Hearing; Newborn

Bloodspot Screening; Early Intervention; Immunization; Lead Poisoning;

WIC; Home Visiting and Vital Records

Delivery hospitals: Discharge summaries


outpatient clinics





Case Ascertainment


a ICD9-CM code 740-759 and 760.71, Any chart with a selected list of

ICD9-CM codes outside 740-759, All stillborn infants, All elective

abortions, All prenatal diagnosed or suspected cases, Chart reviews are

conducted for infants born at the regional perinatal center and the 6 other

maternity hospitals who were identified with an ICD-9 code 740-759 and

other sentinel conditions



Coding: ICD-9-CM

Data Collected














Data Analysis







cluster investigation, Time trends, Epidemiologic studies (using only

program data), Needs assessment, Service delivery, Referral, Grant

proposals, Education/public awareness, Prevention projects

System Integration

System links: Link to other state registries/databases, Link to KIDSNET

(Newborn Developmental Risk Screening; Universal Newborn Hearing;

Newborn Bloodspot Screening; Early Intervention; Immunization; Lead

Poisoning; WIC; Home Visiting; and Vital Records); hospital discharge

database

System integration: Integrated into KIDSNET for web-based provider

reporting

Funding

Funding Source: 10% MCH funds, 85% CDC grant, 5% State

Other

Web site: http://www.health.ri.gov/programs/birthdefects

Surveillance reports on file: 2012 Rhode Island Birth Defects Data Book

Comments: Chart reviews are also conducted for ICD-9-CM codes 740-

759 and other sentinel conditions after the newborn period from sources

such as, genetics counseling and testing centers.

Contacts

Samara Viner-Brown, MS

Rhode Island Department of Health

3 Capitol Hill, Room 407

Providence, RI 02908-5097

Phone: 401-222-5122


William Arias, MPH

Rhode Island Department of Health

3 Capitol Hill, Room 407

Providence, RI 02908

Phone: 401-222-7930




South Carolina

South Carolina Birth Defects Program (SCBDP)



Environmental Agencies/Organizations, Advocacy Groups, Greenwood

Genetic Center (GGC)


Start year: GGC began monitoring in 1992; transitioned to SC DHEC and

expanded in 2006

Earliest year of available data: via GGC, for 3 categories of defects,

since 1993


Health)


Statewide: Yes

Current legislation or rule: A281,R308,H4115


Case Definition

Outcomes covered: Neural tube defects, cardiovascular defects,

genitourinary defects, musculoskeletal defects, orofacial clefts




Age: Up to two years of age

Residence: Currently monitoring in-state births to persons residing in

South Carolina


Case ascertainment: Active case ascertainment


file, Fetal death certificates, Elective termination certificates



program, Cancer registry, autopsy


summaries, Postmortem/pathology logs, ICD-9 codes


Discharge summaries, ICD-9 codes




Case Ascertainment




conditions (e.g., abnormal facies, congenital heart disease, All stillborn

infants, All elective abortions, All prenatal diagnosed or suspected cases,

birth certificate with neural tube defect box checked



Coding: ICD-9-CM

Data Collected








Pregnancy/delivery complications



file/report filled out by staff at facility (laptop, web-based, etc.)


Data Analysis




data sources, Clinical review




Needs assessment, Referral, Grant proposals, Education/public


System Integration

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

environmental databases, SC Vital Records

System integration: SC Vital Records

Funding

Funding Source: 100% General state funds

Other

Web site: http://www.scdhec.gov/health/mch/rpu/bd.htm

Contacts

Vinita Oberoi, MPH

SC Department of Health & Environmental Control

1751 Calhoun St.

Columbia, SC 29201

Phone: 803-898-0771 Fax: 803-898-2065


Mike Smith

SC Department of Health & Environmental Control

1751 Calhoun Street

Columbia, SC 29201

Phone: 803-898-3740 Fax: 803-898-2065


South Dakota


Contacts

Darlene Bergeleen, BS, RN

South Dakota Department of Health

600 E. Capitol Ave.

Pierre, SD 57501

Phone: 605-773-3361 Fax: 605-773-5683




Tennessee

Tennessee Birth Defects Registry (TBDR)




Childhood Prevention Programs, Legislators


Start year: 2000


Organizational location: Department of Health; Office of Policy,

Planning & Assessment: Research Division


Statewide: Yes

Current legislation or rule: TCA 68-5-506


Case Definition

Outcomes covered: 45 major structural birth defects


Fetal deaths - stillbirths, spontaneous abortions, etc. (500 grams or more,

or in the absence of weight, 22 completed weeks of gestation or more)





Hospital based



Other state based registries: Newborn metabolic screening program,

Hospital Discharge Data System





clinics


Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery

logs, Laboratory logs, Cardiac catheterization laboratories, Specialty

outpatient clinics


Case Ascertainment


a ICD9-CM code 740-759, Any chart with selected procedure codes, Any


congenital heart disease, All stillborn infants, ICD-9-CM code 760.71



Coding: ICD-9-CM

Data Collected
















Data Analysis

Data analysis software: SAS, Access, Arc-GIS



data sources, Data/hospital audits



cluster investigation, Time trends, Epidemiologic studies (using only


studies, Needs assessment, Education/public awareness, Prevention

projects

System Integration



Funding


Other

Web site: http://hit.state.tn.us/Reports.aspx

Surveillance reports on file: Tennessee Birth Defects Registry 2003-

2008

Contacts

Dan Henderson

TN Dept. of Health - PPA

425 Fifth Avenue North, 6th Flr.

Nashville, TN 37247

Phone: 615-253-3535 Fax: 615-253-1688




Texas

Texas Birth Defects Epidemiology And Surveillance Branch (TBDES)






Start year: 1994




Population covered annually: 385,746 in 2010

Statewide: Yes

Current legislation or rule: Health and Safety Code, Title 2, Subtitle D,

Section 1, Chapter 87.


Case Definition

Outcomes covered: all major structural birth defects and fetal alcohol

syndrome




Age: up to one year after delivery - FAS up to 6 years




Vital Records: We are now using fetal death certificates (2009+) to aid in

case finding.





clinics, genetics logs, stillbirth logs, radiology logs




catheterization laboratories, Specialty outpatient clinics, genetics logs,

radiology logs


Other sources: licensed birthing centers

Case Ascertainment




conditions (e.g., 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: CNS

condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU

condition (e.g., recurrent infections), Cardiovascular condition, Any



Data Collected














Data Analysis



checking of assigned codes, Clinical review, Timeliness, re-casefinding,

re-review of medical records



cluster investigation, 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 Integration

System 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)

Funding

Funding Source: 48% General state funds, 52% MCH funds * Note:

does not include CDC-funded Texas Birth Defects Research Center funds

Other

Web site: www.dshs.state.tx.us/birthdefects/

Comments: In order to maintain efficiency with increasing workloads; we

stopped the routine review and abstraction of mother’s medical records

(we still occasionally abstract specific information from the mother’s

record when it’s needed and can’t be found elsewhere) and that change

only applies to live born cases (we still routinely review and abstract

information from mother’s medical records for other pregnancy

outcomes).

Contacts

Mark A. Canfield, PhD

Birth Defects Epidemiology and Surveillance Branch

Texas Department of State Health Services

P.O. Box 149347, Mail code 1964

Austin, TX 78714-9347

Phone: 512-776-7232 Fax: 512-776-7330


Lisa K. Marengo, MS

Birth Defects Epidemiology and Surveillance Branch

Texas Department of State Health Services

P.O. Box 149347, Mail code 1964

Austin, TX 78714-9347

Phone: 512-776-6657 Fax: 512-776-7330




Utah

Utah Birth Defect Network (UBDN)


Prevention/Intervention, education




Start year: 1994



Health), CSHCN, University


Statewide: Yes

Current legislation or rule: Birth Defect Rule (R398-5)


Case Definition

Outcomes covered: 742.000 - 759.000



and greater, stillbirths 20 weeks gestation or greater), Elective

Terminations (All gestational ages)

Age: 2 years

Residence: maternal residence in Utah at time of delivery





certificates



ICU/NICU logs or charts, Postmortem/pathology logs, Specialty

outpatient clinics, Champions report live births delivered at their

respective hospitals


Discharge summaries, ICU/NICU logs or charts, Postmortem/pathology

logs, Surgery logs, Specialty outpatient clinics




Other sources: Physician reports, lay midwives

Case Ascertainment






neonatal deaths, All infants in NICU or special care nursery, All prenatal

diagnosed or suspected cases, all fetal deaths certificates, NICU reports,

infant deaths are reviewed



condition, All infant deaths (excluding prematurity), Childhood deaths

between 1 and 6, Any infant with a codeable defect


Data Collected











Family history


Data Collection: Electronic abstract/report filled out by staff, Printed




Data Analysis

Data analysis software: SPSS, SAS, Access, Epi2000, Stata 8



data sources, Clinical review, Timeliness, logical checks, duplicate check

in tracking and surveillance module, case record form checked for

completeness, timeliness through system, manual review of subset of

surveillance module case data compared to case record form.




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

System Integration

System links: Link to environmental databases, link to birth records

Funding

Funding Source: 100%MCH funds

Contacts

Amy E. Nance, MPH

Utah Birth Defect Network

44 N Mario Capecchi Drive, P.O. Box 144699

Salt Lake City, UT 84114

Phone: 801-883-4661 Fax: 801-323-1578


Marcia Lynn Feldkamp, PhD

University of Utah

44 N Mario Capecchi Drive, P.O. Box 144699

Salt Lake City, UT 84114

Phone: 801-584-8490 Fax: 801-883-4668




Vermont

Birth Information Network (BIN)


Prevention/Intervention, Prevention education

Partner: Hospitals, Environmental Agencies/Organizations, Early

Childhood Prevention Programs, Advocacy Groups, Green Mountain

Care Board


Start year: 2006


Organizational location: Department of Health (Statistics)


Statewide: Yes

Current legislation or rule: Act 32 (TITLE 18 VSA §5087)


Case Definition

Outcomes covered: Major birth defects and genetic diseases, very low

birth weight (less than 1500 grams)







file



program

Delivery hospitals: Discharge summaries, Specialty outpatient clinics


outpatient clinics

Third party payers: Medicaid databases, Multi-payer claims database

Other specialty facilities: Cytogenetic laboratories

Other sources: Physician reports, Autopsy Reports

Case Ascertainment







Coding: ICD-9-CM

Data Collected







Illnesses/conditions, Prenatal care, Maternal risk factors





(hospitals, etc.), Electronic file/report submitted by other agencies

(hospitals, etc.)


Data Analysis

Data analysis software: SPSS, Access, Excel

Quality assurance: Comparison/verification between multiple data

sources, Data/hospital audits, Clinical review, Timeliness



variables, Monitoring outbreaks and cluster investigation, Observed vs

expected analyses, Referral, Grant proposals, Education/public


System Integration


data to final birth file, Link to environmental databases

Funding


Other

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

Contacts

Peggy Brozicevic

Vermont Department of Health

P.O. Box 70, 108 Cherry Street

Burlington, VT 05402

Phone: 802-863-7298 Fax: 802-865-7701


Brennan Martin

Vermont Department of Health

P.O. Box 70, 108 Cherry Street

Burlington, VT 05402

Phone: 802-863-7611 Fax: 802-865-7701




Virginia

Virginia Congenital Anomalies Reporting And Education System (VACARES)




Children with Special Health Care Needs, Care Connection for Children

Network


Start year: 1985



Department of Health: Division of Child and Family Health, Child Health

Programs, Genetics and Newborn Screening


Statewide: Yes

Current legislation or rule: Health Law 32.1-69.1,-69.1:1,-69.2

Legislation year enacted: 1985, amended 1986, 1988, 2006

Case Definition



Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages,

Only for the Neural tube defect and Trisomy cases requested)

Age: Below 24 months of age

Residence: All in state births; Out of state births hospitalized in state up

to 24 months of age with reportable birth defect




file



Delivery hospitals: Discharge summaries, medical records abstracts codes

from charts

Pediatric & tertiary care hospitals: Discharge summaries


Case Ascertainment




conditions (e.g., abnormal facies, congenital heart disease),, Any birth

certificate with a birth defect box checked, All neonatal deaths, Chart

review done by the coders in Health Information Management



Coding: ICD-9-CM, ICD-10 for death certificate

Data Collected











(hospitals, etc.)


Data Analysis






variables, Needs assessment, Service delivery, Referral, Grant proposals,


System Integration


System integration: Virginia birth defects registry data (VaCARES) are

reported by hospitals to the state health department via the Virginia Infant

Screening and Infant Tracking System (VISITS II), which is a Web-based

integrated data tracking and management system. VISITS II is a

component of the Virginia Vital Events and Screening Tracking System

(VVESTS), which also includes the Virginia electronic birth certificate

and Virginia Early Hearing Detection and Intervention Program

databases.

Other

Web site: http://www.vahealth.org/gns/vaCares.htm

Surveillance reports on file: Virginia Congenital Anomalies Reporting

and Education System: Birth Defect Surveillance Data 1989-1998

available on Web site.

Additional information on file: Family Brochure and Parent Fact Sheets

(English and Spanish) available on Web site.

Contacts

Kathleen Moline BSN, MA

Division of Child and Family Health, Office of Family Health

Services, Virginia Department of Health

109 Governor Street, 8th Floor

Richmond, VA 23219

Phone: 804-864-7712 Fax: 804-864-7721


Joanne Boise

Division of Child and Family Health, Virginia Department of Health


Richmond, VA 23219

Phone: 804-864-7688 Fax: 804-864-7721




Virginia

Virginia Congenital Anomalies Reporting And Education System (VACARES)




Children with Special Health Care Needs, Care Connection for Children

Network


Start year: 1985



Department of Health (Other, please specify):, Division of Child and

Family Health, Child Health Programs, Genetics and Newborn Screening


Statewide: Yes

Current legislation or rule: Health Law 32.1-69.1,-69.1:1,-69.2

Legislation year enacted: 1985, amended 1986, 1988, 2006

Case Definition


Pregnancy outcome: Live Births, All gestational ages and birth weights,

Fetal deaths (stillbirths, spontaneous abortions, etc.), All gestational ages,

Only for the Neural tube defect and Trisomy cases requested

Age: Below 24 months of age

Residence: All in state births; Out of state births hospitalized in state up

to 24 months of age with reportable birth defect




file



Delivery hospitals: Discharge summaries, medical records abstracts codes

from charts

Pediatric & tertiary care hospitals: Discharge summaries


Case Ascertainment




conditions i.e. abnormal facies, congenital heart disease, Any birth

certificate with a birth defect box checked, All neonatal deaths, Chart

review done by the coders in Health Information Management



Coding: ICD-9-CM, ICD-10 for death certificate

Data Collected











(hospitals, etc.)


Data Analysis






variables, Needs assessment, Service delivery, Referral, Grant proposals,


System Integration


System integration: Virginia birth defects registry data (VaCARES) are

reported by hospitals to the state health department via the Virginia Infant

Screening and Infant Tracking System (VISITS II), which is a Web-based

integrated data tracking and management system. VISITS II is a

component of the Virginia Vital Events and Screening Tracking System

(VVESTS), which also includes the Virginia electronic birth certificate

and Virginia Early Hearing Detection and Intervention Program

databases.

Funding


Other

Web site: http://www.vahealth.org/gns/vaCares.htm

Surveillance reports on file: Virginia Congenital Anomalies Reporting

and Education System: Birth Defect Surveillance Data 1989-1998

available on Web site.

Additional information on file: Family Brochure and Parent Fact Sheets

(English and Spanish) available on Web site.

Contacts

Kathleen Moline, BSN, MA

Division of Child and Family Health

Office of Family Health Services

Virginia Department of Health


Richmond, VA 23219

Phone: 804-864-7712 Fax: 804-864-7721


Joanne Boise

Division of Child and Family Health

Virginia Department of Health


Richmond, VA 23219

Phone: 804-864-7688 Fax: 804-864-7721




Washington

Washington State Birth Defects Surveillance System (BDSS)



Environmental Agencies/Organizations


Start year: 1986- Active and 1991- Passive


Organizational location: Department of Health (Office of Healthy

Communities)


Statewide: Yes

Current legislation or rule: Notifiable Conditions: WAC 246-101


Case Definition

Outcomes covered: From 1987 to 1991 (active surveillance), and from

1991 to the 2000 (passive surveillance), the cases reportable to the Birth

Defects Registry included those with ICD-9-CM codes 740-759, selected

primary cancers, selected metabolic conditions, and FAS/FAE. Since the

adoption of the Notifiable Conditions law in 2000, conditions subject to

mandatory reporting are neural tube defects, orofacial clefts, limb

deficiencies, abdominal wall defects, hypospadias/epispadias and Down

Syndrome. FAS/FAE, Cerebral Palsy and Autism are designated as

reportable with systems being established to ascertain cases outside the

hospital setting.



and greater)

Age: We ascertain cases through 1 year of age for structural defects and

to age ten for FAS/FAE, Cerebral Palsy and Autism.

Residence: resident births; children born, diagnosed or treated in-state





Delivery hospitals: Disease index or discharge index

Pediatric & tertiary care hospitals: Disease index or discharge index

Other sources: university-based FAS/FAE and Autism specialty centers

Case Ascertainment

Coding: ICD-9-CM, ICD-9-CM, FAS/FAE coding scheme will be

utilized in data collection and case description for FAS/FAE cases

Data Collected


etc.), Demographic information (race/ethnicity, sex, etc.), Tests and

procedures, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.)





(hospitals, etc.), Casefinding 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 storage/management: Web-based SQL server

Data Analysis

Data analysis software: SAS, Stata




Monitoring outbreaks and cluster investigation, Time trends, Observed

vs. expected analyses, Education/public awareness

System Integration

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

participant file

Funding

Funding Source: 30% General state funds, 70% MCH funds

Contacts

Kevin Beck, MA

Washington Dept. of Health;

P.O. Box 47835

Olympia, WA 98504-7835

Phone: 360-236-3492 Fax: 360-236-2323


Riley Peters

Washington Dept of Health; Maternal and Child Health; CSHCN

P.O. Box 47835

Olympia, WA 98504-7835

Phone: 360-236-3581 Fax: 360-236-2323




West Virginia

West Virginia Birth Defects Surveillance System Congenital Abnormalities Registry, Education And Surveillance System (CARESS)




Advocacy Groups


Start year: 1989



(Epidemiology/Environment), Department of Health (Vital Statistics),



Statewide: Yes

Current legislation or rule: State Statute Section 16-5-12a

Legislation year enacted: 1991Legislation updated: 2002

Case Definition

Outcomes covered: congenital anomalies of ICD-9 codes 740-759, 760,

764, 765, 766



and greater), Elective Terminations (20 weeks gestation and greater)

Age: 0-6 years



Case ascertainment: Passive case ascertainment, monthly reports sent

from birthing facilities across the state and reproductive outcome forms

submitted by facilities and individual physicians


file, Fetal death certificates, Elective termination certificates



program, Development Disabilities Surveillance, Cancer registry,

AIDS/HIV registry, SIDS/SUID



ICU/NICU logs or charts, Pediatric logs


Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Specialty

outpatient clinics, physicians complete reproductive outcomes forms for

those diagnosed after delivery


Other sources: Physician reports, pediatric referrals of children diagnosed

after delivery and discharge

Case Ascertainment





congenital heart disease), Any birth certificate with a birth defect box

checked, Infants with low birth weight or low gestation (less than 2500

grams or less than 37 weeks), All stillborn infants, All neonatal deaths,

All elective abortions, All infants with low APGAR scores, All infants in

NICU or special care nursery




condition (e.g., recurrent infections), Cardiovascular condition, All infant

deaths (excluding prematurity), Childhood deaths between 1 and 6,

Ocular conditions, Auditory/hearing conditions, Any infant with a

codeable defect

Coding: ICD-9-CM, ICD-10-CM

Data Collected



measurements (weight, gestation, Apgar, etc.), Infant complications, Birth

defect diagnostic information







Family history




(hospitals, etc.)


Data Analysis

Data analysis software: Access


multiple data sources, Timeliness


Rates by demographic and other variables, Time trends, Epidemiologic



projects

System Integration


data to final birth file, Plans continue to link several programs housed in

the Office of Maternal, Child and Family Health.

Funding

Funding Source: 100% MCH Title V Block Grant funds

Other

Web site: http://www.wvdhhr.org/caress/

Contacts

Kathryn G. Cummons, MSW

Research, Evaluation and Planning

350 Capitol St.

Charleston, WV 25301

Phone: 304-558-5388 Fax: 304-558-3510


Melissa A. Baker, MA

OMCFH

350 Capitol St.

Charleston, WV 25301

Phone: 304-356-4438 Fax: 304-558-3510




Wisconsin

Wisconsin Birth Defects Registry (WBDR)

Purpose: Surveillance, Research, Referral to Services





Start year: 2004



Health)


Statewide: Yes

Current legislation or rule: Wisconsin Statutes 253.12

Rules: HFS 116--Took effect April 1, 2003

Legislation year enacted: 2000; rules 2003

Case Definition

Outcomes covered: structural malformations, deformations, disruptions,

or dysplasias; genetic, inherited, or biochemical diseases.

Pregnancy outcome: Live Births (20 weeks gestational age or greater),


and greater)

Age: birth to 2 years

Residence: Statute mandates reporting of birth defects diagnosed or

treated in Wisconsin regardless of residence status



Delivery hospitals: case reports from nursery managers

Pediatric & tertiary care hospitals: case reports from pediatric specialty

clinics


Third party payers: Health maintenance organization (HMOs)



Case Ascertainment

Coding: Wisconsin codes assigned to a specific list of birth defects cross-

walked to ICD-9-CM where possible

Data Collected




information









(hospitals, etc.), Organizations can report by uploading multiple records

from their electronic patient records system to the WBDR secure website.


Data Analysis






cluster investigation, Time trends, Observed vs. expected analyses,




Prevention projects

System Integration

System links: Legislation currently prohibits data linkage.

Funding

Funding Source: MCH Block grant - staffing and Birth

Record/Certificate fees - Registry/Program Private foundation

Other

Web site: https://phin.wisconsin.gov/wbdr/index.html


http://www.dhs.wisconsin.gov/health/children/birthdefects/index.htm

Comments: We have stopped printing reports as of 2008 and instead post

them to our website.

Contacts

Elizabeth Oftedahl, MPH

Division of Public Health, Department of Health and Family Services

1 West Wilson, PO Box 2659

Madison, WI 53701

Phone: 608-261-9304 Fax: 608-267-3824


Peggy Helm-Quest, MS Ed, MHA-PH

Division of Public Health, Department of Health and Family Services

1 West Wilson, PO Box 2659

Madison, WI 53701

Phone: 608-267-2945 Fax: 608-267-3824


Wyoming


Contacts

Amy Spieker, MPH

Wyoming Department of Health

6101 Yellowstone Rd, Ste 420

Cheyenne, WY, 82002

Phone: 307-777-5769 Fax: 307-777-8687


Ashley Busacker, PhD

CDC/WDH

6101 Yellowstone Rd, Ste 510

Cheyenne, WY 82002

Phone: 307-777-6936




US Department of Defense

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


Partner: Universities, Hospitals, Other DoD Programs


Start year: 1998


Organizational location: Deployment Health Research Department, Naval

Health Research Center, San Diego, CA

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


Case Definition

Outcomes 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.


Age: birth to 1 year

Residence: Worldwide; any birth to a US military beneficiary.


Case ascertainment: Combination of active and passive case ascertainment,

Population based, electronic diagnostic codes from all inpatient and

outpatient healthcare encounters of US military beneficiaries.

Delivery hospitals: Disease index or discharge index, Discharge summaries,

Specialty outpatient clinics, all inpatient and outpatient encounters are

captured in standardized DoD data.


Discharge summaries, Specialty outpatient clinics, all inpatient and

outpatient encounters are captured in standardized DoD data.

Third party payers: All inpatient and outpatient encounters 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 Ascertainment


ICD9-CM code 740-759, Any chart with a selected list of ICD9-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.



Coding: ICD-9-CM

Data Collected



(weight, gestation, Apgar, etc.), Tests and procedures, Infant complications,




Prenatal care, Prenatal diagnostic information, Pregnancy/delivery

complications


Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions



(hospitals, etc.)

Database storage/management: Access, SAS

Data Analysis



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, Observed vs. expected

analyses, Epidemiologic studies (using only program data), Identification of

potential cases for other epidemiologic studies, Grant proposals, Prevention

projects

System Integration

System links: DoD databases

System integration: DoD databases

Funding

Funding Source: 100% other federal funding (non-CDC grants)

Other

Web site: http://www.med.navy.mil/sites/nhrc/Pages/Department164.aspx

Surveillance reports on file: DoD/Health Affairs policy memorandum;

annual reports

Contacts

Ava Marie S. Conlin, DO, MPH

Deployment Health Research Department, Dept. 164, Naval Health

Research Center

140 Sylvester Road

San Diego, CA 92106-3521

Phone: 619-767-4489 Fax: 619-767-4806


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




major birth defects data from population-based birth defects...

Documents