Please use this identifier to cite or link to this item:http://hdl.handle.net/20.500.12105/7413
Title
National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)
Author(s)
Alonso-Ferreira, Veronica ISCIII | Abaitua-Borda, Ignacio ISCIII | Zurriaga, Óscar | Astray, Jenaro | Errezola Saizar, Manuel | Aldana-Espinal, Josefa M | Margolles, Mario J | Jiménez, Josep | Palomar, Joaquín A | Santana, Milagrosa | Ramalle-Gomarra, Enrique | Ramos, Julián M | Arribas Monzón, Federico Eduardo | Alamo-Sanz, Rufino | Gutiérrez-Ávila, Gonzalo | Galmés, Antònia | García-Ribes, Miguel | Navarro, Carmen | Ardanaz, Eva | Posada De la Paz, Manuel ISCIII
Date issued
2014
Citation
Orphanet J Rare Dis. 2014; 9(Suppl 1): P5.
Language
Español
Abstract
Background
The development of a national Rare Diseases (RD) registry in Spain was launched in 2012 with the project SpainRDR, supported by the International Rare Diseases Research Consortium (IRDiRC). SpainRDR includes two different strategies: patient registries addressed to patient outcome research and population-based registries addressed to epidemiologic research, health and social planning [1]. The pilot study aims to detect the difficulties of developing the national and population-based RD registry.
Subject
Description
Supplement
7th European Conference on Rare Diseases and Orphan Products (ERCD 2014)
Online version
DOI
Collections
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This item is licensed under a: Atribución 4.0 Internacional