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Latest patient registry for Duchenne and Becker Muscular Dystrophy extends opportunities for clinical trials for patients in Ireland
Action Duchenne, the Duchenne Muscular Dystrophy Charity, has announced that its DMD Registry www.dmdregistry.org is now available to Duchenne Muscular Dystrophy patients in Ireland. 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. 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 (supported also by the charity Muscular Dystrophy Ireland) and 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.
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 apply to be included the Registry by filling in their details online (www.dmdregistry.org). More information on the steps to follow are detailed on the Registry and the Action Duchenne website www.actionduchenne.org.
Nick Catlin, CEO at Action Duchenne said; “This is an exciting development in our Patient Registry Programme. Recent results from clinical trials have already indicated that we are breaking ground in discovering new treatments for this disease. Now we can open up the clinical trials to patients in the UK and Ireland which will help us to carry out more research, faster and provide opportunities to all patients wherever they may live.”