We are thrilled to announce a new milestone achieved in the Decode Duchenne genetic testing program. We recently reached 1,000 carrier tests performed! This means that over 1,000 women have received free carrier testing through the Decode Duchenne program. As of the end of April 2023, 47% or 460 total women tested have been found to be carriers of Duchenne or Becker.
PPMD understands the importance of carriers in the Duchenne and Becker community, and the need for fast, accurate, and cost-effective carrier testing. In 2018, we added carrier testing to our Decode Duchenne program. This addition has been invaluable to patients and providers across the country, and we have provided carrier testing to individuals in 48 different states!
The Decode Duchenne program began in 2013 to provide free genetic testing to those suspected of having Duchenne or Becker. All genetic testing (diagnostic and carrier testing) is performed at our partner laboratory, PerkinElmer Genomics (now Revvity Omics). We are incredibly grateful for the sponsors of the Decode Duchenne program, including our Founding Partner, Sarepta Therapeutics, as well as PTC Therapeutics, Vertex Pharmaceuticals, and NS Pharma. The Decode Duchenne program would not be possible without their generous support.
If you or a loved one need carrier testing for Duchenne or Becker, please speak with your local healthcare provider and share information about PPMD’s Decode Duchenne program. Your local provider will need to submit an application on your behalf in order to access the free carrier testing.
Questions? Please contact one of PPMD’s genetic counselors at decode@parentprojectmd.org or 888-520-8675, option 1.