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 understanding of the disorder. Data is shared with researchers, fueling the fight to end Duchenne and helping to speed the development of new therapies.

During the “Your Citizen Science at Work: How Pain Impacts Quality of Life” session at PPMD’s 30th Annual Conference, experts discussed the significant role of pain in the daily lives of those with Duchenne. The session highlighted findings from PPMD’s patient-reported pain interference project, which gathers data directly from patients and families from The Duchenne Registry to better understand how pain affects their quality of life. Presenters emphasized that pain is a frequently underreported and undertreated aspect of Duchenne, impacting both physical and emotional well-being. The discussion included strategies for better pain management and the need for more comprehensive research to address this critical issue. Overall, the session underscores the importance of incorporating pain management into care plans to improve the overall quality of life for those affected by Duchenne.

Watch the Recording

The Duchenne Registry

The Duchenne Registry is the largest, most comprehensive registry for Duchenne and Becker. By participating in the Registry, PPMD’s team of Certified Genetic Counselors are able to help connect you with medical research, clinical care, clinical trials, and each other. The Registry is also used as a resource for researchers and industries with an interest in Duchenne, allowing access to aggregate, de-identified data provided by patients and their families — information that could prove vital to advances in care and treatment. 

The Duchenne Registry

The Genetics, Clinical Trials, & The Duchenne Registry appointments through our PPMD For You program provide an opportunity to meet one-on-one with PPMD’s genetic counselors to answer any questions you may have about the Registry.

PPMD For You