Who can join DuchenneConnect Australia?

This Registry has been created specifically for individuals who have a diagnosis of Duchenne or Becker muscular dystrophy and for carriers (or possible carriers) of Duchenne/Becker. This includes females with Duchenne and manifesting carriers.

To get a clear picture of everybody in Australia with Duchenne and Becker we need people of all ages to register. This will help us to improve access to:

  • high standards of clinical care
  • services for a better quality of life
  • clinical trials
  • new treatments.

Even if you’re not interested in taking part in a clinical trial, we encourage you to register because your information will still be useful to researchers who are trying to learn more about people with Duchenne or Becker muscular dystrophy and how to best manage symptoms over time.

Parents and guardians of people with Duchenne/Becker muscular dystrophy may register on behalf of children and teens with Duchenne/Becker. Individuals who live with or care for adults with Duchenne/Becker muscular dystrophy may also help with Registry participation by answering questions on their behalf. Each registrant can only have one account in the Registry.

This Registry was designed for individuals in Australia. If you live outside Australia, click here to see if your country has a registry. If so, we encourage you to participate in your country’s registry, alternatively, DuchenneConnect in the USA accepts international registrants.