The DMD Registry acts as a database for patients diagnosed with Duchenne or Becker Muscular Dystrophy. With the patients’ and parents’ consent, volunteers can be drawn from the Registry for clinical research trials of whch a number are underway in the Netherlands, the UK and the United States.

There are approximately 150-200 boys in Ireland with this condition, who can now be included in the registry, following the collaborative working of Action Duchenne, Duchenne Ireland and Muscular Dystrophy Ireland along with the genetics laboratories in London and Dublin. Details of all those registered remain anonymous and all data is kept confidential.

The registry will also facilitate research by collecting relevant data and making it available for specified research projects. Professionals will be able to use the information provided to understand the disease better to develop treatments. It will also strengthen contact between health professionals, researchers and Registry participants and develop their ability to deliver treatments for this disease. 

Who Hosts the DMD Registry

Action Duchenne in the UK hosts the DMD Registry. According to Professor Kate Bushby, Action Research Professor in Neuromuscular Genetics at Newcastle University, UK: “The use of Registries to identify patients for clinical trials is really gathering momentum. There is no doubt that Registries are a great tool to make trials happen faster. Action Duchenne's Registry was one of the first to be linked into the international registry effort co-ordinated by the European Network of Excellence TREAT-NMD and it is great to see so many families keen to take part in new research in this way.”  

Patients or their parents can avail of access to this Registry