DFSG supports the DMD Registry. The UK Duchenne Muscular Dystrophy Registry (the Registry) was established by Action Duchenne Ltd (formerly Parent Project UK Ltd) with a Registry Manager appointed and administered by a Curator. The Registry acts as a database for all patients who have been diagnosed with Duchenne or Becker Muscular Dystrophy and female carriers. Participants are required to give consent before registering and also to complete a Medical Release Form (consent form) to enable Action Duchenne to contact clinicians and geneticists for medical and genetic information. Participants are also required to read the Terms and Conditions carefully when registering and to ask any questions before making a decision whether or not to participate.
The Registry would like to add older boys and young men- there is so much happening in the research world at the moment that it is still important to be aware of this age group too. You may think it's not relevant as clinical trials are not usually aimed at this group but believe me there is work being done that may well need this group too. Please feel free to contact Phillippa (via DFSG) or Angela (AD) for more information