The Duchenne Registry

Share your NOW: The impact of up-to-date data in The Duchenne Registry

The Duchenne Registry is designed as a longitudinal (long-term) research study, collecting information from the same people about the same topics over time. Data entered at one point in time is just that – a…

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January 16, 2025

Advance the Research Evolution with The Duchenne Registry

Everyone can help advance the research evolution for Duchenne and Becker. Bringing data sources together from multiple research endeavors is a key component of PPMD’s plan to advance the research evolution, and The Duchenne Registry…

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Your Citizen Science At Work

By sharing your anonymous data through The Duchenne Registry, you are strengthening the power of a 15-year-old network of patient-powered data that is used to improve care for people living with Duchenne and increase our…

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The Duchenne Registry Has a New Gene Therapy Survey!

Open The Duchenne Registry app and you will notice a new survey on Gene Therapy. If you do not see the Gene Therapy survey listed under the Activities section, please update your app. We recently…

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PPMD Publishes 15 Year Registry Report

PPMD is excited to announce the release of the 15 Year Registry Report. This report is the culmination of data provided by registrants in The Duchenne Registry, as well as collaborative work with expert clinicians…

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January 10, 2023

Your Registry Data at Work: More Complete Data Betters Our Understanding of Duchenne & Becker

In December, several team members of The Duchenne Registry attended the 2022 TREAT-NMD International Conference in Vancouver, Canada. The Registry has been a member of the TREAT-NMD neuromuscular network since we began collecting data in…

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December 12, 2022

The Duchenne Registry Celebrates 15 Years of Data Collection

The PPMD team is incredibly grateful for the families who have shared their Duchenne and Becker experience with The Duchenne Registry over the years. It is hard to believe that the first families joined the…

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December 6, 2022

Complete Your Registry Surveys and You Could Win Your Choice of a $150 Holiday Gift Card!

It’s the Holiday Season and we are thrilled to have another great raffle for families who participate in The Duchenne Registry! This December, the Registry will be giving away TWO $150 e-gift cards to the…

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October 17, 2022

The Duchenne Registry has three new surveys!

The Duchenne Registry, powered by PPMD, is the largest, most comprehensive patient-reported registry for Duchenne and Becker muscular dystrophy. With over 5,000 registrants, the Registry connects Duchenne and Becker patients with actively recruiting clinical trials…

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Win a NEW Xbox Series X with PPMD’s Duchenne Registry!

Win a NEW Xbox Series X! For all of you gamers and parents of gamers, PPMD’s Duchenne Registry is excited to announce we will be giving away a brand new Xbox Series X to one…

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