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Patient centered and interoperable registry hub for Rare Neuromuscular Diseases

EURO-NMD, the European Reference Network for Rare Neuromuscular Diseases, spans 14 European countries, with 61 reference centres that oversee more than 100,000 patients. Their core objectives are to implement clinical practice guidelines and define and monitor core indicators of guideline conforming management, treatment quality and patient health outcomes.

To deliver these objectives, patient registries are key instruments. However, a recognised challenge for rare diseases is the heterogeneity of legacy data sets and the multiplicity of existing registries. EURO-NMD healthcare providers and patient organizations are currently active in more than 120, mostly disease specific and patient run registries. While the existing registries are collecting important information, none of them is used by all EURO-NMD centres and there is no unified NMD or NMD Disease Specific Registry in EU.

The recently launched EURO-NMD Registry Hub aims to build a registry hub for all neuromuscular diseases, including undiagnosed patients, and connect with the existing ones. This EU-funded project will allow linking and extraction of data from different sources, making the hub FAIR compliant (Findable, Accessible, Interoperable and Reusable).

The registry hub will offer the unique opportunity to the fragmented NMD communities and their healthcare providers, centers, patients and patient organizations to communicate between them and exchange knowledge, experience and news.

For more information, please visit the EURO-NMD Registry Hub website.