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. You can join or use the Registry via website or an app on your device. Click on the link  in the email for the method you prefer, which will take you to the app store to download the app or to the website for using the Registry on a web browser. 

4. Follow the screens on your device 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!

1. If you are reasonably sure that you have registered before, we suggest trying to sign in and recovering your username or password if needed.

2. If you are not sure if you have an account, send us an email at coordinator@parentprojectmd.org, and we will be happy to check for you! 

Yes! You can use a web page on a computer or handheld device, or use an app from the Apple or Google Play store. Once you have set up your username and password, they will work in either location. 

Yes! Multiple accounts can have the same contact email, but each account will have a unique username. If you are registering multiple family members, we suggest that the usernames you choose make it easy to identify which username belongs to which person.

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 app is hosted by THREAD Research, a leader in virtual research platforms and mobile apps. All Registry data is stored in the Duchenne Outcomes Research Interchange hosted by Prometheus Research, an IQVIA company. Both THREAD Research and IQVIA comply with important research and privacy regulations for protecting patient data in research. You will learn more about data safety in the app consent process. 

Your prior answers and attachments (such as your genetic test report) are not visible in the app, but they are securely stored within the Registry platform. If you have any questions about your submitted reports and data, please email the Registry Coordinators at coordinator@duchenneregistry.org. 

There are two reasons you would not see any surveys: 1. You are fully caught up on surveys, which means that you completed surveys within the last six months or so. Or, 2. A technical error may be occuring. If you are using the app, we kindly suggest deleting the app and re-installing it. Email coordinator@parentprojectmd.org if you have any technical questions, and we will be glad to troubleshoot with you.

Right now, every person’s account is managed independently, which means that you can register each person independently and will sign out of one account to sign in to another when completing surveys for different people. The Duchenne Registry is working on options to make this process easier in the future!

Yes, email is 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, please email us at coordinator@duchenneregistry.org with your information including current email and the email address you wish to use instead. 

We hope you will complete surveys at least once a year. We suggest setting calendar reminders to log in and update your Registry account. The Registry team will also reach out with occasional reminders via email and app notifications.

Yes, we welcome registrants from any country and we have over 125 countries represented in the Registry. The Registry is currently available in US English and US Spanish (Latin American). 

Please contact the Duchenne Registry Coordinators with any questions: coordinator@duchenneregistry.org or 888-520-8675, option 2.