PPMD Launches Next Phase of Genetic Testing Program, Decode Duchenne in collaboration with BioMarin Pharmaceutical, PTC Therapeutics, & Sarepta Therapeutics

PPMD is excited to today announce a collaboration with BioMarin Pharmaceutical Inc., PTC Therapeutics, and Sarepta Therapeutics, Inc. in the next phase of the highly successful Decode Duchenne program. Decode Duchenne is a nationwide program to assist individuals with Duchenne muscular dystrophy in accessing genetic testing, interpretation, and counseling.


Thanks to the collaboration and generous support of these partners, Decode Duchenne will provide genetic testing, interpretation, and counseling at no cost to eligible patients who are unable to access testing due to barriers such as a lack of insurance or insufficient insurance coverage. For patients with Duchenne, genetic testing is used to identify the genetic mutation and confirm the diagnosis. In addition, genetic testing can be used not only to determine a patient's eligibility for certain clinical trials, but also their compatibility for potential therapies on the horizon. Despite the benefits of testing, in some cases patients are unable to access genetic testing through their insurance provider.

“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.”

-- PPMD President, Pat Furlong

The program will be administered by PPMD through DuchenneConnect, the clinical registry that connects people living with Duchenne to clinical trials.

To participate in Decode Duchenne, patients must:


  • Have a confirmed diagnosis or be suspected of having Duchenne or Becker muscular dystrophy based on clinical symptoms, as assessed by their treating physician, and have a positive creatine kinase (CK) test.
  • Have not previously had genetic testing, or must require additional genetic testing to identify a causative mutation.
  • Provide documentation to confirm the patient’s lack of insurance coverage, insufficient insurance coverage, or a denial of coverage for genetic testing.
  • Be citizens or legal residents of the United States or Canada.
  • Register on DuchenneConnect.


The next phase of Decode Duchenne is expected to launch in October 2015. To learn more about Decode Duchenne, please visit DuchenneConnect.org

Thank you to BioMarin, PTC Therapeutics, and Sarepta for supporting this important initiative!

To read the official press release, please click here.

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