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We are excited to announce that Parent Project Muscular Dystrophy and Sarepta Therapeutics are joining forces on a genetic testing program for patients with Duchenne or Becker muscular dystrophy. Through the new genetic testing program, called Decode Duchenne, PPMD will provide testing at no cost to eligible patients who are unable to access testing due to barriers such as a lack of or insufficient insurance coverage. Sarepta is supporting the PPMD-administered initiative.

We believe all patients with Duchenne should have the opportunity to receive genetic testing in order to understand their genetic mutation, have confidence in their diagnosis, and learn about opportunities to participate in clinical trials. This program seeks to address barriers to genetic testing in Duchenne that have long frustrated healthcare providers, patients and their families.

To Participate

The Decode Duchenne genetic testing program is expected to launch before the end of 2013 through PPMD's DuchenneConnect, an online resource and registry for patients and families affected by Duchenne and their healthcare providers.

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, as determined by the DuchenneConnect Coordinator, a board-certified genetic counselor.
  • 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.
  • Register on DuchenneConnect.

Receive Launch Notification

Please ensure that your child is registered with DuchenneConnect in order to take advantage of the Decode Duchenne program and receive updates on its launch. Thank you to Sarepta Therapeutics for supporting this important initiative!

Together we will end Duchenne.

Read Sarepta's press release.

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Tags: PPMD Blog, Staff

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