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Utilice este identificador para citar o enlazar este documento: https://ria.asturias.es/RIA/handle/123456789/4682


Título: National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)
Autores: Alonso, Veronica
Margolles Martins, Mario
Palabras Claves: International Rare Diseases Research Consortium
SpainRDR
Spain
Spanish Rare Diseases Registries
Fecha Edición: 11-Nov-2014
Cita Bibliográfica: 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
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