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The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration

BACKGROUND: The European Union acknowledges the relevance of registries as key instruments for developing rare disease (RD) clinical research, improving patient care and health service (HS) planning and funded the EPIRARE project to improve standardization and data comparability among patient regist...

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Detalles Bibliográficos
Autores principales:	Taruscio, Domenica, Mollo, Emanuela, Gainotti, Sabina, Posada de la Paz, Manuel, Bianchi, Fabrizio, Vittozzi, Luciano
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2014
Materias:	Methodology
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4210567/ https://www.ncbi.nlm.nih.gov/pubmed/25352985 http://dx.doi.org/10.1186/2049-3258-72-35

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