The FAIR journey of a patient-driven registry: Reflections and practical solutions from the Duchenne Data Platform FAIRification experience.
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DOI: 10.1177/22143602251382969
Abstract: BackgroundSince 2018, World Duchenne Organization, Dutch Duchenne Parent Project, and Duchenne Data Foundation have been championing efforts to make Duchenne-related data reusable in combination with data contained in other registries. Transforming human language into a… read more here.
Keywords: data platform; fairification; language; duchenne data ... See more keywords