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.
Full details on how the Irish Registration Process are available here