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

Bruna Dos Santos VieiraCésar H BernabéShuxin ZhangHaitham AbazaNirupama BenisAlberto CámaraRonald CornetClémence M A Le CornecPeter A C 't HoenFranz SchaeferK Joeri van der VeldeMorris A SwertzMark D WilkinsonAnnika JacobsenMarco Roos
Published in: Orphanet journal of rare diseases (2022)
This work shows that a dedicated team of FAIR data stewards is an asset for harmonising the various processes of making data FAIR in a large organisation with multiple stakeholders. Additionally, multi-levelled training activities are required to accommodate the diverse needs of the ERNs. Finally, the lessons learned from the experience of the FAIRification steward team described in this paper may help to increase FAIR awareness and provide insights into FAIRification challenges and solutions of rare disease registries.
Keyphrases
  • electronic health record
  • big data
  • palliative care
  • case report
  • quality improvement
  • data analysis