The UK Duchenne Muscular Dystrophy Registry (The DMD 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.

Registration and access is only authorised to people who are registered with a clinician in their country of residence because they have been diagnosed as having either Duchenne or Becker Muscular Dystrophy, are a carrier of a variant in the Dystrophin gene or are the parent or guardian of a child with a variant in the Dystrophin gene.