Parent Project Muscular Dystrophy Launches Next Phase of Genetic Testing Program, Decode Duchenne in collaboration with BioMarin Pharmaceutical Inc., PTC Therapeutics, and Sarepta Therapeutics

Sep 30, 2015, 12:00 ET from Parent Project Muscular Dystrophy

HACKENSACK, N.J., Sept. 30, 2015 /PRNewswire-USNewswire/ -- Parent Project Muscular Dystrophy (PPMD) today announced 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.

PPMD President, Pat Furlong, is grateful for the support for Decode Duchenne. "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."

The program will be administered by PPMD through DuchenneConnect, a 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

About Decode Duchenne
Decode Duchenne is a genetic testing, interpretation, and counseling program through Parent Project Muscular Dystrophy's (PPMD) clinical trial registry DuchenneConnect for people with Duchenne or Becker muscular dystrophy. Decode Duchenne, is supported by BioMarin Pharmaceutical Inc., PTC Therapeutics, and Sarepta Therapeutics. It provides 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.

To learn more about Decode Duchenne, including information on how to participate, visit

About Parent Project Muscular Dystrophy

Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.

We invest deeply in treatments for this generation of people affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.

Everything we do—and everything we have done since our founding in 1994—helps people with Duchenne live longer, stronger lives. We will not rest until every person with Duchenne has a treatment. Go to for more information or to learn how you can support our efforts and help families affected by Duchenne.

About DuchenneConnect

DuchenneConnect is a robust and cutting-edge registry and resource that serves the needs of the Duchenne and Becker community. The purpose of DuchenneConnect is to connect Duchenne and Becker patients with actively recruiting clinical trials and research studies, and to educate patients and families about Duchenne and Becker care and research. At the same time, DuchenneConnect is a valuable resource for clinicians and researchers in academia and industry, allowing access to aggregated, de-identified information provided by patients and their families -- information that is vital to advances in the care and treatment of Duchenne.

DuchenneConnect was created in 2007 by Parent Project Muscular Dystrophy (PPMD), with assistance from the Centers for Disease Control and Prevention and Emory Genetics. PPMD is the sole guardian of DuchenneConnect and its material. To learn more about DuchenneConnect, visit

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