At this to the EURO-NMD Registry Hub documentation page you can find an overview into the project’s structure and operations. The following essential resources are available for understanding the framework of our registry:
- Registry paper: “EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders”
- Registry Governance
- Data Security Policy
- Data Sharing Agreement
- Informed Consent Form in English
- Data Access Policy
- Publication Policy
- EURONMD Annual Meeting 2024 Registry Slides