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Paper Details

Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries.
Orphanet J Rare Dis
7
2022
ERN, ERNs, Rare Diseases, Rare disease, humans, patient, rare, rare disease
Author NameAffiliation
Ronald CornetAmsterdam UMC location University of Amsterdam
Ronald Cornet
Peter A C 't HoenCenter for Molecular and Biomolecular Informatics, Radboud Institute for Molecular Life Sciences, Radboud University Medical Center
Peter A C 't HoenCenter for Molecular and Biomolecular Informatics, Radboud Institute for Molecular Life Sciences, Radboud University Medical Center
Franz SchaeferUniversity of Heidelberg
Morris A SwertzUniversity of Groningen and University Medical Center
Morris A SwertzUniversity of Groningen and University Medical Center
Mark D WilkinsonUniversidad Politecnica de Madrid (UPM) - Instituto Nacional de Investigacion y Tecnologia Agraria y Alimentaria (INIA)
Mark D WilkinsonUniversidad Politecnica de Madrid (UPM) - Instituto Nacional de Investigacion y Tecnologia Agraria y Alimentaria (INIA)
Marco RoosLeiden University Medical Center
Marco RoosLeiden University Medical Center
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Release 1.2