We are pleased to announce that the EURO-NMD Registry, part of the ERN EURO-NMD, has officially enrolled its first patient at the beginning of July 2024! The registry has been operational since January 2024, with four healthcare providers currently participating and two more in the process of finalising ethics approval.
The EURO-NMD Registry serves both paediatric and adult patients across Europe who are diagnosed with or suspected of having a neuromuscular disorder (NMD). It is designed to achieve several key objectives in line with the broader aims of EURO-NMD: to improve the quality of care across the network, to support translational research and to facilitate clinical trials by collecting data from a large number of patients and providing regulated access to the data in accordance with a data access policy.
The registry, built on REDCap, provides each EURO-NMD centre with a secure, dedicated data space where patient-level data is restricted to that centre. Healthcare providers can enter data either manually or through bulk uploads, or they can join the EURO-NMD Registry Hub – a federated network that connects the EURO-NMD Registry to other neuromuscular registries according to the FAIR data stewardship principles. The Hub allows cross-registry analysis through federated queries without the need for physical data transfer – a concept referred to as “data visiting”.
Centres wishing to participate must meet legal and ethical requirements, including signing a Data Sharing Agreement (DSA) with the registry and obtaining the necessary ethical approvals. Access can be requested through the centre’s representative.
For more information, please contact us at registry.helpdesk@ern-euro-nmd.eu
