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

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

Abstract 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...

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Bibliographic Details
Main Authors: Bruna dos Santos Vieira, César H. Bernabé, Shuxin Zhang, Haitham Abaza, Nirupama Benis, Alberto Cámara, Ronald Cornet, Clémence M. A. Le Cornec, Peter A. C. ’t Hoen, Franz Schaefer, K. Joeri van der Velde, Morris A. Swertz, Mark D. Wilkinson, Annika Jacobsen, Marco Roos
Format: Article
Language:English
Published: BMC 2022-12-01
Series:Orphanet Journal of Rare Diseases
Subjects:
FAIR
Stewardship
Rare disease
Patient registry
Data steward
Online Access:https://doi.org/10.1186/s13023-022-02558-5

Internet

https://doi.org/10.1186/s13023-022-02558-5

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