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The de novo FAIRification process of a registry for vascular anomalies.

Karlijn H J GroenenAnnika JacobsenMartijn G KerslootBruna Dos Santos VieiraEsther J van EnckevortRajaram KaliyaperumalDerk L ArtsPeter A C 't HoenRonald CornetMarco RoosLeo Schultze Kool
Published in: Orphanet journal of rare diseases (2021)
In conclusion, a detailed de novo FAIRification process of a registry for vascular anomalies is described. To a large extent, the process may be reused by other rare disease registries, and we envision this work to be a substantial contribution to an ecosystem of FAIR rare disease resources.
Keyphrases
  • risk assessment