Registry Hub Paper out now!

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 

Click here to read the paper


The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit