Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries

INTRODUCTION: Rare disease patient data are typically sensitive, present in multiple registries controlled by different custodians, and non-interoperable. Making these data Findable, Accessible, Interoperable, and Reusable (FAIR) for humans and machines at source enables federated discovery and anal...

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Detalles Bibliográficos
Autores principales: dos Santos Vieira, Bruna, Bernabé, César H., Zhang, Shuxin, Abaza, Haitham, Benis, Nirupama, Cámara, Alberto, Cornet, Ronald, Le Cornec, Clémence M. A., ’t Hoen, Peter A. C., Schaefer, Franz, van der Velde, K. Joeri, Swertz, Morris A., Wilkinson, Mark D., Jacobsen, Annika, Roos, Marco
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9749345/
https://www.ncbi.nlm.nih.gov/pubmed/36517834
http://dx.doi.org/10.1186/s13023-022-02558-5

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