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 and research studies. At the same time, the Registry is a valuable resource for researchers, allowing access to data provided by patients and their families—information that is vital to advances in the care and treatment of Duchenne.
To better understand your health and your daily experience living with Duchenne/Becker, The Duchenne Registry asks families to respond to several surveys. We are excited to share that The Registry has recently launched three new surveys to complete:
- Female Carrier Survey: This survey is only for carriers in their own accounts and was developed to help us better understand how being a carrier may affect the gynecologic and reproductive systems. Reproductive concerns have not been studied in carriers in the past—it is very important to begin asking these questions.
- Nutrition and Supplements Survey: We know that many people with Duchenne use over-the-counter supplements. Collecting information about the supplements will help researchers understand which supplements people use and when they use them.
- Other Chronic Medical Conditions Survey: This survey asks questions about other major medical issues that are included in TREAT-NMD’s updated Duchenne dataset. All members of the TREAT-NMD neuromuscular network, including PPMD’s The Duchenne Registry, collect certain pieces of data; this enables the data to be compiled and compared with data from other Duchenne registries across the world. Some of the issues in this survey, like obesity, may be related to Duchenne or Duchenne treatment, but others, like cancer, are unrelated but still important to know about.
Please help advance research by opening your Registry app and completing all of your surveys!
Not in The Duchenne Registry?
If you have not yet joined The Duchenne Registry and have questions about why you should join, please watch our short video that explains the benefits of joining the Registry, and read our App Q&A.
To join The Duchenne Registry, please visit duchenneregistry.org
Schedule time with a PPMD Genetic Counselor
Do you have questions about joining the Registry? Please reach out to PPMD’s genetic counselors – we are here to help you!
- Email us at firstname.lastname@example.org.
- Call us at 888-520-8675. We are available Monday – Friday, 8am – 5pm EST.
- Or click the Calendly link to schedule a time that is convenient for you. Enter your phone number, and one of our genetic counselors will call you on the specified date and time.
THANK YOU for participating in The Duchenne Registry App!
YOUR data is critical in our fight to end Duchenne!Join The Duchenne Registry >