Identifying data sources for a national population-based registry: the experience of the Spanish Rare Diseases Registry. Issue 3 (March 2015)

• Record Type: Journal Article
• Authors: Zoni, A.C.; Domínguez Berjón, M.F.; Barceló, E.; Esteban Vasallo, M.D.; Abaitua, I.; Jiménez Villa, J.; Margolles Martins, M.; Navarro, C.; Posada, M.; Ramos Aceitero, J.M.; Vázquez Santos, C.; Zurriaga Llorens, O.; Astray Mochales, J.
• Is Part Of: Public health. Volume 129:Issue 3(2015:Mar.)
• Page Start: 271
• Page End: 275
• Publication Date: 2015-03
• Subjects: Public health -- Periodicals; Public health -- Periodicals; Electronic journals; 362.1
• DOI: 10.1016/j.puhe.2014.12.013
• Languages: English
• ISSNs: 0033-3506

Abstract

Highlights: 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.