Since September 2020, several brainstorming sessions have taken place between the Freiburg development team and FAIR Data Stewards at Radboudumc to
News from the Pilot Patient Registries: Duchenne Data Platform
The Duchenne Data Platform (DDP) is a patient-led registry created in 2019 and managed by Duchenne Parent Project in the Netherlands. It is a
How the EURO-NMD Registry Hub will be FAIR
The EURO-NMD registry hub for all neuromuscular diseases, including undiagnosed patients, will be a FAIR registry where Interoperability and
‘The way forward is not data sharing but data visiting’
Peter-Bram ‘t Hoen, Interoperability and FAIRification Work Package Lead, explained in his online presentation on setting up a FAIR registry for
Independent Advisory Committee (IAC) established
An group of external stakeholders can act as a reliable sounding board providing valuable information regarding a wide array of expertise. At the same
Euro-NMD Registry Hub
Patient centered and interoperable registry hub for Rare Neuromuscular Diseases EURO-NMD, ERN for Rare Neuromuscular Diseases, spans 14 European