Article ID | Journal | Published Year | Pages | File Type |
---|---|---|---|---|
10516466 | Public Health | 2015 | 5 Pages |
Abstract
- Population-based disease registries are key instruments for rare diseases (RD) research.
- The Spain Rare Disease Registry (Spain-RDR) is an IRDiRC project aimed at creating a national population-based RD registry.
- This paper provides a comprehensive description of rare disease data sources in Spain.
- The estimated number of RD that may be linked to the Spain-RDR is around 1200.
- The Spain-RDR will contribute to improving the planning and management of these diseases.
Related Topics
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Authors
A.C. Zoni, M.F. DomÃnguez Berjón, E. Barceló, M.D. Esteban Vasallo, I. Abaitua, J. Jiménez Villa, M. Margolles Martins, C. Navarro, M. Posada, J.M. Ramos Aceitero, C. Vázquez Santos, O. Zurriaga Llorens, J. Astray Mochales,