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The Duchenne Registry is temporarily unavailable.

We are in the process of upgrading The Duchenne Registry to a new & improved platform! When we launch within the next few weeks, this new platform will provide you with the ability to contribute and update your Registry data directly from your mobile device, in-app notifications to remind patients and caregivers when important Registry information is needed, and more.


If You Have a Registry Account:

You will receive an invitation email in the coming weeks with a link to download the app and a unique activation code. Please be on the lookout!


If You Are a New Registrant:

You will be able to join The Duchenne Registry as soon as we complete the transition to the new platform in the next few weeks. As soon as the Registry is available, we will update this page, the PPMD news section, and the PPMD Facebook page with the announcement and link to access the Registry. If you would like us to email you directly when the Registry is available, please provide your contact information here.



If you have any questions, please contact us at or call 888-520-8675.


The Strength of the Registry is You!

Your data is critical in the fight to end Duchenne. Thank you to our community of patients and caregivers for your participation and your patience!


-The Duchenne Registry Team