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 added this new survey to collect data on who is receiving gene therapy, which gene therapy they received, whether the gene therapy was given in a clinical trial or as an approved treatment, and where the gene therapy was given. This type of data will be crucial in understanding the natural history of Duchenne and how those who have received gene therapy compare to those who have not received the treatment.

Please help advance research by opening your Registry app and completing all of your medical 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 click on this link.

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 coordinator@duchenneregistry.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. 

THANK YOU for participating in The Duchenne Registry!