1. An initiative of the International Rare Diseases Research Consortium-IRDiRC Spanish Rare Diseases Registries Research Network – SpainRDR. Inventory of Patient RD registries. Spain Institute of Rare Diseases Research (IIER) Instituto de Salud Carlos III Laura del Otero Sanz IIER-ISCIII

2. BACKGROUND SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC  WP2 task T6. Undertaking an inventory of existing patient RD registries in Spain along with their main characteristics and external collaborations (funding, sponsors, sustainability, project participation, etc.).

3. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC  In this first phase, we have carried out a preliminary study to identify and describe the RD registries exisiting in Spain.  The final porpuse/aim of this inventary of registries is to get a database with every patient RD registries in Spain with basic, accessible and updated information. BACKGROUND

4. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC  Descriptive study of the RD registries existing in Spain at november of 2012.  Consulted sources  Data analysis: Excel 2010 and SPSS 19. EPIRARE Survey ORPHANET DGSANCO projects EPIRARE Survey ORPHANET DGSANCO projects METHODOLOGY

5. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC  Main variables collected  Limitations: no accessible information in some of the consulted sources.  Name and email address,  Data source,  Geographical coverage,  Rare Disease included,  Case definition,  Standardized criteria,  Aims of registries. METHODOLOGY

6. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC RESULTS N Total: 67

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

8. RESULTS

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11.  To develop and implement a strategy for:  Obtaining new data and updated existing data,  Making easier the access to new registries / databases that want to belong and participate in the inventory of registries at national level.  Make accessible the inventory of registries and the form in SpainRDR website. TASKS NEDEED

13. SpainRDR - Spanish Rare Diseases Registries Research Network – https://spainrdr.isciii.es An initiative of the International Rare Diseases Research Consortium-IRDiRC  There are variety and different types of registries of rare diseases at national level.  Some of them are connected with European and International Rare Disease Networks.  Rare disease registries are a powerful tool to advance in the knowledge of these diseases, to enhance their research, and to assist in the planning of health and social resources. CONSLUSIONS

14. 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