PPMD Announces Launch of Next Phase Decode Duchenne Genetic Testing Program

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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Parent Project Muscular Dystrophy (PPMD), the largest and most comprehensive nonprofit organization in the US focused on finding a cure for Duchenne muscular dystrophy, recently announced it will collaborate with Sarepta Therapeutics, Inc, BioMarin Pharmaceutical Inc. and PTC Therapeutics for the upcoming phase of the very successful Decode Duchenne program.

The Decode Duchenne national program assists people with DMD in genetic testing, interpretation and counseling through DuchenneConnect, a robust and cutting-edge registry. Thanks to the support and partnership of these companies the program will provide to eligible individuals with DMD, free genetic testing, its interpretation and result counseling. The program will be offered for those who do not have access to clinical tools due to a lack of insurance or insufficient coverage.

Genetic testing is used for DMD patients to identify which genetic mutation they carry, as well as to confirm disease diagnosis. It can also be used to determine if a patient is eligible for certain studies and if they are candidates to receive certain therapies.

PPMD President, Pat Furlong, stated in a recent press release. “Since the initial start-up phase of Decode Duchenne two years ago, we have been able to identify people with Duchenne within populations that traditionally have not had access to genetic testing, interpretation, and counseling because of costs associated with the process. With the support of BioMarin, PTC Therapeutics, and Sarepta, Decode Duchenne will continue to provide free genetic testing and counseling to qualifying patients. Identifying people with Duchenne muscular dystrophy is critical in our fight to end this devastating disorder so that optimal care is provided as soon after diagnosis as possible, as well as connecting patients to the most relevant clinical trials or approved therapies. We could not be more appreciative or proud to collaborate with three exceptional industry partners who continue to prove their commitment to the Duchenne community by supporting important programs like Decode Duchenne.”

To have access to Decode Duchenne program, DMD patients must:

  • Be citizens or legal residents of the US or Canada;
  • Have their Duchenne or Becker muscular dystrophy confirmed diagnosis, which needs to be examined by their physician. They must also have a positive results in the creatine kinase (CK) test.
  • Must not have had a previous genetic testing or they must need another genetic testing to identify the underlying disease mutation.
  • Provide proof of insufficient insurance coverage, denial of coverage for genetic testing, or full lack of insurance coverage.
  • Be registered on DuchenneConnect.

PPMD expects to launch the next phase of the program this October. For more information, those interested can visit DuchenneConnect.org