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 Registry in October 2007 and we have been actively collecting and sharing data for 15 years! Thank you for helping us to reach this wonderful milestone and most importantly, for helping to advance research and treatments for Duchenne and Becker.
In honor of the Registry’s 15-Year Anniversary, we are compiling a 15-Year Registry Report which will summarize the data we have collected over the years and highlight some insights we have gained from the data. We are currently analyzing data and preparing graphics and plan to have the 15-Year Registry Report available in 2023. Stay tuned! In the meantime, below are some remarkable numbers summarizing the content of The Duchenne Registry.
When you join and update your account in The Duchenne Registry, you are strengthening the power of a 15-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.
Below are several numbers showing the impact of The Duchenne Registry over the past 15 years.
Thank you for making this possible and for your continued support of The Duchenne Registry! If you are not yet a member of the Registry, please visit DuchenneRegistry.org and join today.Join the Registry
Please contact the Registry genetic counselors at email@example.com or 888-520-8675.