1. Visit DuchenneRegistry.org and click “Join.” You will need to enter your email address to pre-register.
2. You will receive an invitation email from no-reply@threadresearch.com. (Remember to check your spam/junk folder if you do not see the email in your Inbox.)
3. Click on the link (iOS or Android) in the email to download the app on your smartphone. The link will expire after 7 days. If the link has expired, go to the Apple App Store or Google Play Store to search for and download the app.
4. Follow the app screens to complete the registration and consent process. You will need to enter the Activation Code from your invitation email in order to complete registration. The Activation Code does not expire.
5. Please “Allow notifications” so you can receive important Registry reminders!

Video Instructions

• New Participants – Registering One Family Member
• New Participants – Registering Multiple Family Members

WATCH: Instructions for New Participants – Registering One Family Member

WATCH: Instructions for New Participants – Registering Multiple Family Members

1. You should have received an email invitation from no-reply@threadresearch.com. (Remember to check your spam/junk folder if you do not see the email in your Inbox.)
2. Click on the link (iOS or Android) in the email to download the app on your smartphone. The link will expire after 7 days. If the link has expired, go to the Apple App Store or Google Play Store to search for and download the app.
3. Follow the app screens to complete the registration and consent process. You will need to enter the Activation Code from your invitation email in order to complete registration.
4. Please “Allow notifications” so you can receive important Registry reminders!
5. Now you are in the app! When you begin the Medical Surveys under the “Activities” tab (bottom left), you will notice that your most recently completed answers will appear in the app. If an answer is no longer correct, just click the correct answer and move to the next question in the survey.

WATCH: Instructions for Existing Participants with One Registered Family Member

1. You should have received an email invitation from no-reply@threadresearch.com for each of your registry accounts, IF each registry account had a unique email address. (Remember to check your spam/junk folder if you do not see the emails in your Inbox.) If all your accounts had the same email address, see #8 below.
2. Click on the link (iOS or Android) in one of the emails to download the app on your smartphone. The link will expire after 7 days. If the link has expired, go to the Apple App Store or Google Play Store to search for and download the app.
3. Follow the app screens to complete the registration and consent process for one of your family members. You will need to enter the Activation Code from that person’s invitation email in order to complete registration for that person.
4. Please “Allow notifications” so you can receive important Registry reminders!
5. Once in the app, go to the “Profile” tab (bottom right) and click Accounts. Then click Add an Account. You will go through the same registration and consent process for each family member, including having to enter each person’s unique Activation Code. Activation Codes do not expire.
6. To switch between accounts in the app, go to the “Profile” tab (bottom right) and click Accounts. In the screen that slides open, you will see a list of the accounts that have been added with a green check mark indicating the account you are currently signed into with the name and email address for that person. Just tap the account that you would like to switch to!
7. Next go to the “Activities” tab (bottom left). You will see the name and email address associated with the account you are currently signed into. When you begin the Medical Surveys, you will notice that your most recently completed answers will appear in the app. If an answer is no longer correct, just click the correct answer and move to the next question in the survey.
8. If all of your registry accounts had the same email address, you will need to follow the same instructions as a brand new registrant (see top of page). You will not see your previous answers in the Medical Surveys under the “Activities” tab, but do not worry. We still have all of your previous data in our registry, it is just not visible in your app. If it’s been awhile since you last completed the Medical Surveys, please go ahead and complete them again so we have up-to-date information.

WATCH: Instructions for Existing Participants with Multiple Registered Family Members

1. Visit DuchenneRegistry.org and click “Join.” 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 “This email address has already been registered.” Search your email inbox and your spam/junk folder for the invitation email from no-reply@threadresearch.com. Follow the appropriate instructions above (depending on whether you have one or more registry accounts in your family).
2. Or, if you can’t recall what email address was used to create an account, please email coordinator@duchenneregistry.org and provide the full name and date of birth of the individual you want to register. We will check the Registry and respond back to you as soon as possible.

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!

WATCH: How to Navigate the App & Complete Surveys

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.

WATCH: How to Navigate the App & Complete Surveys

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 coordinator@duchenneregistry.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).

WATCH: Instructions for Existing Participants with Multiple Registered Family Members

WATCH: Instructions for New Participants – Registering Multiple Family Members

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: coordinator@duchenneregistry.org or 888-520-8675. We are available Monday – Friday, 8am – 5pm ET.