• Skip to primary navigation
  • Skip to main content
EURO-NMD Registry Website

EURO-NMD Registry Website

European Reference Network for Neuromuscular Diseases - EURO-NMD - Registry Website

  • About this project
  • News
  • Our Partners
  • Project Workplan

Nawel Lalout

ERN EURO-NMD and Duchenne Parent Project begin leveraging their FAIR data

16 November 2022

ERN EURO-NMD and Duchenne Parent Project begin leveraging their FAIR data

A new proof-of-concept was realised to demonstrate the value of querying FAIR data between two FAIR registries: The Duchenne Data Platform and the

Category iconFAIR

FAIR Data Sharing Without Oversharing

10 October 2022

FAIR Data Sharing Without Oversharing

The European Reference Network for Neuromuscular Diseases and the Duchenne Parent Project in the Netherlands can now begin leveraging their FAIR data

Category iconFAIR,  Project update

26 November 2021

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

Category iconFAIR,  Project update

EURO-NMD Registry Hub Impact

3 March 2021

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

Category iconProject update

22 February 2021

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

Category iconFAIR,  Project update

ERN EURO-NMD and Duchenne Parent Project begin leveraging their FAIR data

21 February 2021

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

Category iconFAIR,  Pilot Patient Registries

EURO-NMD Registry Hub update

17 February 2021

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

Category iconFAIR,  Project update

FAIR Data Sharing Without Oversharing

11 February 2021

‘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

Category iconProject update

Contact us

registry@ern-euro-nmd.eu

Twitter feed is not available at the moment.

This project is funded by the 3rd EU Health Programme;
Grant Agreement: 947598
EURO-NMD Registry — HP-PJ-2019

Total EU funding: 200,000€
Total Patient Organizations in kind contribution : 274,641.20€
This project is co-funded by
the European Union