The UK Duchenne Muscular Dystrophy Registry (The Registry) is funded and managed by Action Duchenne.
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 when registering and to complete a Medical Release Form (consent form) to enable Action Duchenne to contact clinicians and geneticists for medical and genetic information.
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.
To register online: https://www.dmdregistry.org/login