October 14, 2021 / Clinical Trials,Research

The Duchenne Registry has a new survey – Therapy Services!

We know that therapy services such as physical, occupational, and speech therapy are helpful to people with Duchenne and Becker throughout their lives.   The new Therapy Services survey was developed to better understand who is receiving therapies, when they are receiving those therapies, and families’ perceptions of how helpful those therapies are.   The information from this survey will be used in many ways, but especially as a part of our ongoing efforts to better understand the benefits of early diagnosis.   Please help advance research by opening your Registry app and completing the Therapy Services survey.

Don’t forget to complete or update our other surveys!   Most of our surveys update every 6 months, to make sure that we have updated and accurate information.

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 https://www.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 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. 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 >

Join Our Mailing List