If you have Duchenne or Becker muscular dystrophy or if you are a female carrier of Duchenne or Becker, join The Duchenne Registry and your data will help fuel the fight to end Duchenne. We share your anonymous Registry data with researchers to speed the development of new therapies.
When you join and update your account in The Duchenne Registry, you are strengthening the power of a 12-year-old network of patient-powered data that will be used to improve care for people living with Duchenne and increase our understanding of the disorder. By sharing your data, you become a citizen scientist by contributing to real scientific research.
No one should have to navigate a Duchenne diagnosis alone. Be part of the global research network to end Duchenne. The data you enter is not only shared with researchers in the United States, but is also shared with the TREAT-NMD International Neuromuscular Registry, which pools data from thousands of patients worldwide and enables more powerful data analysis and discovery.
Once you register and complete your Medical Surveys, we will let you know when you might be a good fit for research studies and clinical trials. Your data also helps drug developers know the size of the Duchenne population available for trials and helps identify new trial sites, increasing our community’s access to trials and potential therapies.
Decode Duchenne provides free genetic testing, interpretation, and counseling to people with Duchenne or Becker muscular dystrophy who have been unable to access genetic testing due to financial barriers. The program is administered by Parent Project Muscular Dystrophy through The Duchenne Registry, and is supported by Sarepta Therapeutics and PTC Therapeutics.Learn More
We’ve made some changes to The Duchenne Registry and we’d love to share them with you! Learn how to download the Registry App and what to expect when you login or join for the first time.