The DM-scope registry: a rare disease innovative framework bridging the gap between research and medical care

BACKGROUND: The relevance of registries as a key component for developing clinical research for rare diseases (RD) and improving patient care has been acknowledged by most stakeholders. As recent studies pointed to several limitations of RD registries our challenge was (1) to improve standardization...

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Detalles Bibliográficos
Autores principales: De Antonio, Marie, Dogan, Céline, Daidj, Ferroudja, Eymard, Bruno, Puymirat, Jack, Mathieu, Jean, Gagnon, Cynthia, Katsahian, Sandrine, Hamroun, Dalil, Bassez, Guillaume
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6547518/
https://www.ncbi.nlm.nih.gov/pubmed/31159885
http://dx.doi.org/10.1186/s13023-019-1088-3

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