The EURO-NMD Registry paper has just been published on the Orphanet Journal of Rare Diseases. As it is open access you can read it here: click to open in another tab
We leave below a Q&A teaser about what is discussed inside the paper.
Why EURO-NMD Registry Hub?
- 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.
Why having a FAIRified Registry?
- To answer complex and specific questions automatically without moving data
- To gain richer insights by accessing (with right access conditions) more datasets in multiple registries
- To make HCP data resources discoverable by other authorised stakeholders, driving collaboration
- To publish “FAIR data”, that will adhere to data-focused Journal’s best-practices (e.g. Scientific Data from the Nature Publishing Group, and/or GigaScience), and thus allow new possibilities for high-impact, data-centric publications
- To ultimately contribute significantly to improve care and treatments’ research for the neuromuscular diseases community.
What difference does it make for our patients?
- The EURO-NMD Registry Hub is designed as a clinician-patient partnership.
- Patients representatives have participated in all stages of the Registry design and implementation
- The Registry answers unmet needs of patients for improved research and better care for all neuromuscular diseases
- Patients contribute with Patient Outcome Measures along side clinical-entered data and decide what is meaningful for their care
- Patients sit at Registry Steering Committee and the Data Access Committee and have a say in the governance of the registry and in the access to and sharing of patient data