REDCap REDCap (Research Electronic Data Capture) is used as the choice of Data-Entry-System of choice. REDCap consists of a powerful API
Overall Architecture for the FAIRification process
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