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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...
Autores principales: | Lochmüller, Hanns, Ramirez, Antonio Nino, Kakkis, Emil |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2021
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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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