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