Published in:
Open Access
01-12-2014 | Oral presentation
National Rare Disease Registries: overview from Spain
Authors:
M Posada de la Paz, V Alonso, O Zurriaga, J Astray, JM Aldana-Espinal, MJ Margolles, J Jiménez, JA Palomar, M Santana, E Ramalle-Gomarra, JM Ramos, FE Arribas, R Álamo, G Gutiérrez-Ávila, A Galmés, M García Ribes, C Navarro, M Errezola, ME Ardanaz, A Almansa, P Garcia-Primo, MJ Carroquino, I Abaitua
Published in:
Orphanet Journal of Rare Diseases
|
Special Issue 1/2014
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Excerpt
The Spanish Rare Diseases Registries Research Network (SpainRDR) is a project aimed to build the National Rare Diseases Registry in Spain based on the input of two different methods: patient outcome research registries and population-based registries. The project has been approved within the IRDiRC framework and is co-funded by the Institute of Health Carlos III (ISCIII), the Health Departments of the Autonomous Communities (regions) and the Spanish Ministry of Health, Social Services and Equity (MSSSI) of Spain. The project addresses one of the main recommendations of the National Rare Diseases Strategy and also collaborates with some other RD registering actions like GRDR-NIH, RD-CONNECT and EPIRARE. …
