Por favor, use este identificador para citar o enlazar este Item:http://hdl.handle.net/20.500.12105/7413
Título
National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)
Autor(es)
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
Fecha de publicación
2014
Cita
Orphanet J Rare Dis. 2014; 9(Suppl 1): P5.
Idioma
Español
Tipo de documento
conference paper
Resumen
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.
Palabras clave
Descripción
Supplement
7th European Conference on Rare Diseases and Orphan Products (ERCD 2014)
Versión en línea
DOI
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