Meet our new & improved platform!
After twelve years of collecting data to advance research for Duchenne, PPMD’s Duchenne Registry is excited to share the new and improved Duchenne Registry Mobile App with our community of patients and caregivers.
Updates to The Duchenne Registry platform are aimed at making it easier to navigate, more engaging for patients and families, and more convenient to access.
When you join as a new registrant, or login for the first time as a returning registrant, you’ll see and experience key features including:
- An easy to read patient consent form clearly explaining the purpose of the Registry and 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.
And, soon to come, you’ll experience:
- Data integration of your patient reported data with clinician reported data from electronic health records (EHRs);
- The ability to connect and contribute data from wearable health devices; and
- Real-time data visualization dashboard to show your data in use.
WATCH: How to Navigate the App & Complete Surveys
How to Join / Login
If you are an existing participant of The Duchenne Registry, your account has automatically been transferred over to The Duchenne Registry’s new Mobile App, and you have received an email invitation containing your personal activation link (search for an email from ‘no-reply@THREADResearch.com’). If you have any questions, or have not received your email invitation containing your link and Activation Code, please contact us.
- WATCH: Existing Participants with One Registered Family Member
- WATCH: Existing Participants with Multiple Registered Family Members
WATCH: Instructions for Existing Participants with One Registered Family Member
WATCH: Instructions for Existing Participants with Multiple Registered Family Members
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.
- WATCH: New Participants – Registering One Family Member
- WATCH: New Participants – Registering Multiple Family Members