April 1, 2020 / Community,Research

Duchenne Research Needs You: Your Self-Quarantine Checklist

Your Self-Quarantine Checklist:

1. Clean the house

2. Organize the closets

3. Join The Duchenne Registry!


Downloading the Registry’s new smartphone app is much easier and more fun than cleaning house or organizing closets! And you can help to advance research and treatments for Duchenne and Becker without ever leaving your home. It’s a win-win for everyone!

If you are already active in the app, thank you!

Please remember to complete your surveys in the Activities section and make sure you submit a copy of your genetic test report. And, if you haven’t had genetic testing, or need updated testing, PPMD can coordinate FREE genetic testing through our Decode Duchenne program.

If you are not yet in the app, now is a great time to join!

The Registry app is available in the Apple App Store and Google Play Store, but you will need an Activation Code.

  • If you were previously registered in our web portal, you already received your invitation email and Activation Code from no-reply@threadresearch.com. If you cannot find this email, please email coordinator@duchenneregistry.org to request your Activation Code.
  • If you are brand new to the Registry, go to duchenneregistry.org and click “Join”. Enter your email address on the Pre-Registration page, and you will be sent an invitation email with your Activation Code.

Please visit our website for detailed instructions and helpful how-to videos!

Join the Registry

We believe that having access to the Registry in the palm of your hand will make it easier than ever before to participate in the Registry. Plus, keeping your information up-to-date ensures that you are receiving the most accurate research and trial updates for you or your child.

Sorry we can’t help you with the cleaning! But please reach out to the Registry genetic counselors if you have any questions about the new app:  888-520-8675 or coordinator@duchenneregistry.org. We are available M-F, 8am – 5pm EST.

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