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! We believe the app will make the Registry more convenient to access, easier to navigate, and more engaging for patients and families.
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.
If you have never participated in The Duchenne Registry, now is a great time to join!
Just 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 a short video about getting started in the app.
If you are already participating in The Duchenne Registry, thank you for sharing your data with us!
Your account has automatically been transferred over to The Duchenne Registry App, and you have received an email invitation containing your personal activation link (search for an email from ‘no-reply@THREADResearch.com’) and an Activation Code. If you have not received your email invitation, please contact us. Watch our videos to help existing registrants get started in the app.
If you don’t remember if you or your child have an account in The Duchenne Registry, do not worry!
Just visit the pre-registration page and enter the email address you think would be associated with your or your child’s Registry account. If that email address already exists in our Registry, you will be told so, and if not, you can use the email address to start a new account. Please try all your email addresses before starting a new account.
All instructions for the app, including short instructional videos, are available on The Duchenne Registry website. We also encourage you to read the App Q&A page since this should answer most of your questions. However, please do not hesitate to reach out to the Registry staff at firstname.lastname@example.org or 888-520-8675. We are available Monday – Friday, 8am – 5pm ET.
We are so excited about bringing The Duchenne Registry into the palm of your hands! We hope you will share our excitement and spread the word about our new app with family and friends who are affected by Duchenne or Becker.Meet the App