Registry hub for neuromuscular conditions
Currently, there is no unified registry hub for neuromuscular conditions 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.
The general objective of this proposal is to build a registry hub for neuromuscular diseases, including undiagnosed patients, and connect with the existing ones.
The Euro-NMD Registry Hub intends to collect data from the patients seen by the 61 HCPs that participate in the Euro-NMD network. This data will then be entered in existing disease-specific registries by ensuring the interoperability with those registries. Consequently, federated queries would be enabled from the Euro-NMD Registry Hub platform.
DDF contributes to:
- The interoperability of the EURO-NMD Registry and existing registries through FAIR data technology;
- The communication and dissemination activities of the project.
Learn more about our activities.
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