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EURO-NMD Registry Website

EURO-NMD Registry Website

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

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News

EURO-NMD Registry Hub update

28 July 2022

Update on EURO-NMD Registry Hub development

The data entry forms have been fully implemented. We are currently working on the creation of site dashboards to inform the participating centres

Category iconProject update

13 December 2021

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

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

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

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

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

9 February 2021

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

Category iconIAC,  Project update

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Contact us

registry@ern-euro-nmd.eu

Euro-NMD tweetsFollow

ern euro_nmd
Tue 9 August 2022

💻 Upcoming #ernRND joint #webinar with ERN EURO-NMD and the European Academy of Neurology
📚 Vanishing white matter
📅 13. september, 3-4 pm CET
🗣️ Marjo van der Knaap, Amsterdam University Medical Center, the Netherlands
Sign up 👉 https://bit.ly/3Smfe1C
#neurology #pediatric

Reply on Twitter 1556831128585117696Retweet on Twitter 15568311285851176968Like on Twitter 155683112858511769618Twitter 1556831128585117696
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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€
Total kind contribution : 368,500.63€
This project is co-funded by
the European Union