The data entry forms have been fully implemented. We are currently working on the creation of site dashboards to inform the participating centres
The technical development of the EURO-NMD Registry Hub
An overview of the technical development of the EURO-NMD Registry Hub – user-friendly, content-rich and FAIR. A review of the Work Package 4 progress
Innovative and Sustainable FAIR solution for ERN Euro-NMD
By Nawel van Lin, FAIR Data Steward at Radboudumc The Euro-NMD Registry Hub for all neuromuscular diseases, including undiagnosed patients, will
FAIRification process: practical aspects
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