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TuberOus SClerosis Registry to Increase Disease Awareness: A Review on Alignment of Its Planning, Execution, and Publications With European Medicines Agency Guidelines

Patient registries offer a powerful and practical means of real-world data collection system for rare diseases. Many guidelines have been released to standardize patient registries, although most of them do not address issues specific to rare disease patient registries. In November 2018, the Europea...

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Detalles Bibliográficos
Autores principales: Marques, Ruben, Thole, Henriette, Ruiz de Morales, José G.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7243042/
https://www.ncbi.nlm.nih.gov/pubmed/32499750
http://dx.doi.org/10.3389/fneur.2020.00365

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