Scoping review of the recommendations and guidance for improving the quality of rare disease registries
Article in Orphanet Journal of Rare Diseases (May 2024)
The most recent citing publications are shown below. View all 25 publications that cite this research output on Dimensions.
Lessons from the Rare Diseases Registry and Analytics Platform framework for development of a national rare diseases registry for India
Article in Journal of Biosciences (February 2024)
EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders
Article in Orphanet Journal of Rare Diseases (February 2024)