We wanted to make the Registry as user-friendly as possible. We heard from families that our website could be cumbersome at times, so we wanted to create a platform that would be simple and easy to use. With access to the registry in the palm of your hand, you can update your data while at the doctor or whenever it is most convenient and top-of-mind for you. The result of our work is the new Duchenne Registry app, which we think will make it much easier for busy families like yours to participate in the Registry!
Yes. The Registry app is completely separate from the PPMD app. The Duchenne Registry app is where you will participate in the Registry by consenting, answering surveys, and providing important data on your family members with Duchenne or Becker. The PPMD app provides helpful resources such as emergency care information, critical research news, and advocacy alerts.
Yes. The Duchenne Registry is deeply committed to protecting your privacy and identity, and we will use every available measure to ensure the security of your personal information. The Registry is hosted by THREAD Research, a leader in virtual research platforms and mobile apps. THREAD Research complies with important research and privacy regulations for protecting patient data in research. You will learn more about data safety in the app consent process.
We have all of your historical data! No data was lost during the transition to our app platform. All data entered into the Registry since it began in 2007 is stored in a secure database at Prometheus Research. All data entered into the new app will flow into this database at Prometheus, which is called the Duchenne Outcomes Research Interchange. When you download the app you should see your most recent answers to survey questions. These have been transferred for you to make the transition as seamless as possible.
Your medical record attachments (such as your genetic test report) are not currently visible in the app, but we plan to have these visible in the future. If you need copies of any of your records, please email the Registry Coordinators at firstname.lastname@example.org. The Coordinators include two board-certified genetic counselors with extensive experience in Duchenne.
It’s easy to have two or more accounts within the same family, all accessed within the same app. You will be able to switch between accounts, once you have them set up in the app. Please see instructions above for details on how to activate your children’s accounts (if they are current registrants), or how to start new accounts for them (if they are not yet registered).
Yes! With the new app, both the parent and the adult child can have the app on their smartphones and access the same account (but not at the same time). They will both have to use the same email and password to access the same account. So a parent could complete some surveys, and the adult child could complete other surveys on his/her own. We encourage adults with Duchenne to be more active participants in their medical care, and this will be an easy way for them to do that while providing valuable data for research.
Yes, email will still be the primary way in which we communicate with our registrants, so please make sure that the email you use with the app is your primary email that you check frequently. If at any time you wish to change the email associated with your account, you can do that in the ‘Profile’ section of the app. The new app will also allow us to send app notifications, but the majority of communication will be via email. All notifications regarding clinical trials and research studies that you or your child may qualify for will still come via email.
Yes, we welcome registrants from any country and we have over 100 countries represented in the Registry. The app will be available in the Apple App Store and Google Play Store in most countries, but it is currently available only in US English.
Please contact the Duchenne Registry Coordinators with any questions: email@example.com or 888-520-8675. We are available Monday – Friday, 8am – 5pm ET.