Consensus on the criteria needed for creating a rare-disease patient registry. A Delphi study

Autor: Cavero-Carbonell C, Gras-Colomer E, Guaita-Calatrava R, López-Briones C, Amorós R, Abaitua I, Posada M, Zurriaga O

Publikováno v: JOURNAL OF PUBLIC HEALTH
r-FISABIO. Repositorio Institucional de Producción Científica
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r-FISABIO: Repositorio Institucional de Producción Científica
Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunitat Valenciana (FISABIO)

Patient registries (PRs) are important tools for public-health surveillance and rare-disease research. The purpose of this study is to identify the most important criteria for the creation of a rare-disease PR that could be used by public-health auth

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=dedup_wf_001::02f8db1360344ade774ffad1ada129b9
https://fundanet.fisabio.san.gva.es/publicaciones/ProdCientif/PublicacionFrw.aspx?id=1563