Patient centered and interoperable registry hub for Rare Neuromuscular Diseases
A recognised 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.
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 Euro-NMD Registry Hub intends to both collect data from the patients seen by the 61 HCPs that participate in the Euro-NMD network but also use the data entered in existing disease-specific registries by ensuring the interoperability with those registries that allows federated queries to be run from the Euro-NMD Registry Hub platform.