How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care: A Report of the Virtual Second International Meeting on Duchenne Data Sharing, March 3, 2021

BACKGROUND: For patients with rare diseases such as Duchenne and Becker muscular dystrophy (DMD/BMD), access to their health data is key to being able to advocate for themselves and be in control of their care. Since 2018, the DMD/BMD patient community has been committed to making DMD/BMD-related da...

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Detalles Bibliográficos
Autores principales: van Lin, Nawel, Paliouras, Georgios, Vroom, Elizabeth, ’t Hoen, Peter A.C., Roos, Marco
Formato: Online Artículo Texto
Lenguaje:English
Publicado: IOS Press 2021
Materias:
Meeting Report
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8673524/
https://www.ncbi.nlm.nih.gov/pubmed/34334415
http://dx.doi.org/10.3233/JND-210721

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8673524/
https://www.ncbi.nlm.nih.gov/pubmed/34334415
http://dx.doi.org/10.3233/JND-210721

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