Registry hub for neuromuscular conditions
Currently, there is no unified neuromuscular specific registry in the European Union. Although existing registries are collecting important information, none of them are used by all EURO-NMD centers. Patient registries are key instruments for the ERNs’ to be able to deliver its objectives. A recognized challenge for rare diseases is the heterogeneity of legacy data sets and the multiplicity of existing registries. EURO-NMD health care providers and patient organizations are currently active in more than 120, mostly disease specific and patient run registries.
For this reason, the EURO-NMD Registry Hub was created. The aim of this EU-funded project is to build a registry hub for all neuromuscular diseases. This includes undiagnosed patients, and will connect with existing registries. The project will use internationally agreed, state of the art concepts such as being built with a system that will collect standardised common data elements, defined by the Joint Research Center.
This project has received funding from the 3rd EU Health Programme under grant agreement No 947598
This project has received in kind contributions from patient organizations