The Duchenne Registry
Duchenne Muscular Dystrophy
Archived App (Last seen on 7 Jul 2026)
This is an archived listing of the app previously available on the App Store.Although the app is no longer distributed by Apple, you can still view its description, screenshots, version history, ratings, and metadata for reference.
About
This app collects data from individuals diagnosed with Duchenne or Becker muscular dystrophy, and their carriers. It aims to make this information searchable for clinicians and researchers to advance understanding and speed up trials. Users can access information on relevant clinical trials and research studies.
What's New in The Duchenne Registry
3.3.7
January 9, 2025
We updated About Me Survey and Corticosteroids Survey with minor updates
Developer apps
FAQ
What is The Duchenne Registry?
The Duchenne Registry is a platform designed for individuals diagnosed with Duchenne or Becker muscular dystrophy, and their carriers. It collects and securely shares de-identified data with researchers and clinicians to advance understanding and treatment of these conditions.
Who can register for The Duchenne Registry?
Individuals diagnosed with Duchenne or Becker muscular dystrophy, carriers of these conditions, and parents or guardians registering on behalf of children and teens can participate. Caregivers of adults with these conditions can also assist with registration.
How is my data protected in The Duchenne Registry?
The Duchenne Registry is committed to protecting user privacy and identity. Personally identifying information is removed before data is shared with researchers, and all data is handled with robust security measures.
Is participation in The Duchenne Registry mandatory?
No, participation in The Duchenne Registry is completely voluntary. Users can choose to participate, stop participating at any time, or withdraw their data without penalty or explanation.
What kind of information will I be asked to share?
You will be asked to respond to surveys about your health and daily experiences living with Duchenne/Becker. You may also be asked to share a copy of your genetic test report, with the option to decide how much information you wish to share.
Can I access information about clinical trials through The Duchenne Registry?
Yes, the Registry offers access to information regarding clinical trials and research studies that may be a good fit for you or your child. This helps connect participants with potential research opportunities.
What devices is The Duchenne Registry available on?
The Duchenne Registry is currently supported on iPhone and iPod devices. It is designed for users who have these Apple mobile devices.
How often is The Duchenne Registry updated?
The latest version of The Duchenne Registry is 3.3.7, which was last updated on January 9, 2025. This indicates regular updates to improve functionality and security.
