- The EURO-NMD registry is connected to what is called ‘EURO-NMD Registry Hub’ through an interoperability layer.
- The Hub provides an entry point to other neuromuscular registries that follow the FAIR data stewardship principles and enable GDPR-compliant information exchange
- Four national or disease-specific patient registries are interoperable with the EURO-NMD Registry, allowing for federated analysis across these different resources.
- Collectively, the Registry Hub brings together data that are currently siloed and fragmented to improve healthcare and advance research for neuromuscular diseases.
- The EURO-NMD Registry Hub is designed as a clinician-patient partnership.
