Information for patients

Why is my inscription important for the Registry?

Taking part in the registry is important for two aspects, for yourself and for science and the stakeholders managing care for neuromuscular diseases.

For yourself: By taking part in the registry, you could potentially be contacted to take part in a clinical trial. If researchers or pharmaceutical companies are looking for candidates for clinical trials, they would contact the registry, that would contact the NMRCs who would then be able to contact you.

For the stakeholders and for science: Taking part in a Registry enables researchers to evaluate the importance of each disease. With the analysed data, we can observe the evolution of the diseases throughout time. These valuable pieces of information can guide the stakeholders to make decisions on how to improve the health services to those patients. You may not personally benefit from the Registry but there will be long-term benefits from your participation which would greatly assist the progress of research in understanding and managing these rare diseases.