We are pleased to announce that the EURO-NMD Registry is now open to healthcare providers across Europe that are not affiliated with ERN EURO-NMD. Centres caring for patients with rare neuromuscular diseases can contribute patient data, with valid informed consent and in accordance with the EURO-NMD Registry Data Sharing Agreement.
Since its operational launch in mid-2024, the registry has onboarded 30 ERN EURO-NMD-affiliated centres across 16 EU countries, with just under 1,000 patients enrolled so far. Expanding participation beyond the network is an important step towards broader geographical coverage and greater representation of people living with rare neuromuscular diseases. It supports the registry’s goals of improving care, advancing cross-border, multicentre research into disease progression and patient outcomes, and identifying patient cohorts across the EU for clinical research.
By participating, your centre can:
- Work with your centre’s data. Authorised users can consult their centre’s data and, according to their permissions, export data, generate reports and perform statistical analyses.
- Monitor care quality and performance. The registry automatically calculates quality and clinical performance indicators from the data collected.
- Put your centre’s data into context. Visual dashboards allow comparisons between your centre’s data and aggregated data from across the network.
- Build a stronger European evidence base for research. Bringing together clinical data scattered across institutions and countries supports a better understanding of rare neuromuscular diseases, their progression, therapeutic efficacy, and patient outcomes.
The EURO-NMD Registry covers children and adults with rare neuromuscular diseases, including patients who do not yet have a confirmed diagnosis. It provides a harmonised framework for collecting information across neuromuscular conditions. Its data model combines European Common Data Elements for rare diseases, shared neuromuscular data elements and disease-specific datasets.
The EURO-NMD Central Registry is also a component of the wider Registry Hub ecosystem, which connects existing neuromuscular registries to support federated analyses. This enables analyses across registries while keeping individual-level data within their respective registries.
The registry’s creation and development are supported by a founding consortium of seven institutions: Assistance Publique–Hôpitaux de Paris (AP-HP), University Medical Center Freiburg, RadboudUMC, World Duchenne Organisation (WDO), Duchenne Data Foundation (DDF), the Institute of Myology (AIM) and AFM-Téléthon (French Muscular Dystrophy Association).
Interested in joining? Visit the EURO-NMD Registry Hub website for participation requirements and onboarding instructions, or contact registry@ern-euro-nmd.eu for support.