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Título : National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)
Autor : Alonso, Veronica
Margolles Martins, Mario
Palabras clave : International Rare Diseases Research Consortium
SpainRDR
Spain
Spanish Rare Diseases Registries
Fecha de publicación : 11-nov-2014
Citación : Alonso et al.: National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR). Orphanet Journal of Rare Diseases 2014 9(Suppl 1):P5
Resumen : 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). 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 eveloping the national and population-based RD registry
Descripción : Poster publicado en: Orphanet Journal of Rare Diseases 2014, 9(Suppl 1):P5
URI : https://ria.asturias.es/RIA/handle/123456789/4682
Aparece en las colecciones: Open Access DRIVERset
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