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An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR https://spainrdr.isciii.es Institute of Rare Diseases Research (IIER) Instituto de Salud Carlos III File: IR11/RDR-XX Years: Dec, 2011-Dec, 2013 (2012-2014)

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Page 1: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

An initiative of the International Rare Diseases Research Consortium-IRDiRC

Spanish Rare Diseases Registries Research Network - SpainRDR

https://spainrdr.isciii.es

Institute of Rare Diseases Research (IIER)Instituto de Salud Carlos III

File: IR11/RDR-XX

Years: Dec, 2011-Dec, 2013 (2012-2014)

Page 2: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

Work Package 2 T7.2

March 4th 2013

Page 3: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

INTRODUCTION

WP2

T5T6

T7

T8T1

T2

T3

T4 T1

T2T3

IntegrantesAsturias: Mario Margolles Cataluña: Josep Giménez (coordinador) Extremadura Julián Mauro Ramos Galicia: Carmen Navarro Fernández Balbuena, Cristina VázquezMadrid: Jenaro Astray Mochales (coordinador), María Felicitas Domínguez Berjón, María Dolores Esteban Vasallo, Enrique Barceló González, Ana Clara ZoniComunidad Valenciana: Oscar Zurriaga LlorensInstituto de Salud Carlos III: Ignacio Abaitua, Manuel Posada.

WORK PACKAGE 2 (T 7.2): analyses of data sources (i.e., social and health sources)

Page 4: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

INTRODUCTION

OBJECTIVE

Identify possible data sources on RD available in each Autonomous Community (Regional Government).

Page 5: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

METHODS

DESIGN: DESCRIPTIVE STUDY

SURVEY: to collect the information in a structured and homogeneous way

CONTACT: Coordinator of RDR each Autonomous Community

TOOL: Access database

Page 6: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

STRUCTURAL

• Individualized Health Card database

• Basic Minimun Data Set (BMDS)

• Mortality registry

• Tumor Registry

• Renal Chronic Diseases Registry

• Metabolic Diseases Registry

• Notifiable Diseases Registry

• Orphan Drugs Registry

NON STRUCTURAL

• Primary Care Electronic Medical History

• Birth Defects Registry

• Birth Registry

• Research project

• Others

DATABASE: data sources

METHODS

Page 7: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

DATABASE: list of variables

1. Autonomous Community2. Generic name of the information source3. Specific name of the information source4. Objective data source5. Scope: regional/ national. Others6. Type of Source: Primary / Secondary7. Start date and end of the source8. Preview data transfer: Yes / No9. Availability of the data: Nominal data/

anonymous / aggregated10. Availability data to include in RDR: Yes /

No.11. Collection: active / passive. 12. Case identification: Yes / No13. Additional data: Yes / No14. Estimated cases / year15. Periodicity of case update.16. Contact / Email

17. Type of rare diseases: ICD-9-CM large groups.

18. Patient identification: Health card, social security number / sex / date of birth / medical record number

19. Date of clinical data: Onset, diagnosis, death.

20. Clinical variables and treatment21. File Structure (Format): Excel / ASCII-

TXT/DBF / Other22. Type of coding: ICD-9 / ICD 19/CIAP-

WONCA/ S-NOMED / NANDA / ORPHANET / None / Literal/ Other

23. Format: Excel / ASCII TXT / DBF

METHODS

Page 8: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

RESULTS

Data sources ANDALUCÍA

ARAGON

ASTURIAS

BALEARES

CANARIAS

CANTABRIA

CASTILLA -L

CASTILLA-LM

CATALUÑA

EXTREMADURA

GALICIA

LA RIOJA

MADRID

MURCIA

NAVARRA

C.VALENCIANA

PAIS VASCO

STRUCTURAL

Health card database x x x x x  x x   x x   x x x x x  X

H. Discharge DB (BMDS) x x x x x x x x x x x x x x x x x

Mortality registry   x x x x  x   x x x x x   x x x

Tumor Registry x x x x x  x x   x x x x x x x x

Renal Chronic D. Registry   x x   x     x x x   x     x  

Metabolic D. Registry x   x x x  x x    x x x x x x x x x

Notifiable D. Registry x x x x  x  x x x  x x   x x x x  

Orphan drugs Registry x   x x x  x x  x x x   x x    

NON STRUCTURAL

PC. electronic medical history x x x x x  x x    x     x x x  

Birth Defects Registry  x   x       x         x   x x x

Birth Registry x                     x     x  

Other drugs registries x   x      x       x              

Table 1: Sources of information available for RDR in each Autonomous Community AC anonymous publication?

Page 9: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

RESULTS

VariablesHealth card data base

BMDS

Mortality Registry

Tumor Registry

Renal Chronic D. Registry

Metabolic D. Registry

Notifiable D. Registry

Orphan Grug Registry

National health card number (TIS) 9 11 - 6 6 3 3 1

CA health card number (CIPA) 13 14 - 10 4 7 7 5

Social security number 12 7 - 7 3 3 4 -

ID number 13 5 11 11 9 3 5 2

Country of birth 6 3 1 2 2 3 4 1

Name /Surname 13 5 11 13 9 15 11 9

Address 10 6 5 5 4 5 7 4

Date of birth 13 16 12 13 8 15 10 7

Sex 13 16 12 13 8 15 12 8

Death 3 4 7 4 4 - 3 1

Date of death 4 15 13 13 7 3 8 1

Table 2: Number of Autonomous Communities that had essential information from data sources in 2012.

Page 10: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

CONCLUSION

BMDS is the only source available in all the A.C

More effort is needed:• to take up outpatients and to identify cases from private hospitals• to merge health sources with social sources

To date, some Autonomous Communities do not have authorization to send nominal data to the National RDR, in part due to the legal issues of data protection.

Next step: publication

Page 11: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

Principal Investigators

Principal Investigators

Principal Investigators

Principal Investigators

Principal Investigators

Principal Investigators

Principal Investigators

Principal Investigators

Principal Investigators

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC

Page 12: An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network - SpainRDR

Thank you very much!

SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC


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