The de novo FAIRification process of a registry for vascular anomalies

The de novo FAIRification process of a registry for vascular anomalies

Abstract Background Patient data registries that are FAIR—Findable, Accessible, Interoperable, and Reusable for humans and computers—facilitate research across multiple resources. This is particularly relevant to rare diseases, where data often are scarce and scattered. Specific research questions c...

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Bibliographic Details
Main Authors: Karlijn H. J. Groenen, Annika Jacobsen, Martijn G. Kersloot, Bruna dos Santos Vieira, Esther van Enckevort, Rajaram Kaliyaperumal, Derk L. Arts, Peter A. C. ‘t Hoen, Ronald Cornet, Marco Roos, Leo Schultze Kool
Format: Article
Language:English
Published: BMC 2021-09-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Rare diseases
Patient registry
Vascular anomalies
FAIR data
FAIRification process
Interoperability
Online Access:https://doi.org/10.1186/s13023-021-02004-y

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