Meet our app platform!
The Duchenne Registry transitioned to an app platform in 2019 to make the Registry more convenient to access, easier to navigate, and more engaging for patients and families.
When you join the Registry app, you’ll see and experience key features including:
- Easy-to-read patient consent information that clearly explains the purpose of the Registry and the benefits you may receive by participating;
- A series of surveys called “Activities” designed to capture patient reported data in an easy-to-use mobile app interface; and
- App notifications to remind patients and caregivers when important registry information is needed.
WATCH: Meet the App
How to Join / Login
Joining for the First Time?
If you are joining The Duchenne Registry for the first time, complete our pre-registration form to get started. You will then receive an email invitation with a link to download The Duchenne Registry Mobile App. The email will also include your Activation Code, which you will use to register within the app. For more detailed instructions, check out our App Q&A.
Not sure if you have registered to use our app-based platform before?
We’re here to help. Email a Registry genetic counselor at coordinator@parentprojectmd.org or call 888-520-8675 and we will explore your next steps to become active in the Registry.