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Disease monitoring programs of rare genetic diseases: transparent data sharing between academic and commercial stakeholders

It has recently been suggested that registries for rare neuromuscular diseases should be formed and governed exclusively by physicians and patients in an effort to limit conflicts of interest. Enacting such an approach would not only be challenging logistically and financially, but it would also exc...

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Detalles Bibliográficos
Autores principales: Lochmüller, Hanns, Ramirez, Antonio Nino, Kakkis, Emil
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7980582/
https://www.ncbi.nlm.nih.gov/pubmed/33743771
http://dx.doi.org/10.1186/s13023-021-01687-7

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