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

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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

Journal title: Orphanet Journal of Rare Diseases

Journal publisher: BioMed Central

Published year: 2022

DOI identifier: 10.1186/s13023-022-02558-5

ISSN: 1750-1172