Application & Eligibility

Decode Duchenne can provide free testing to those who:

  1. Have a confirmed or suspected diagnosis of Duchenne or Becker muscular dystrophy OR if you’re an asymptomatic female (showing no symptoms) of an affected relative with a known mutation from previous DNA testing;
  2. Have financial barriers to receiving genetic testing; and
  3. Are citizens or legal residents of the United States or Canada

How to Apply

Complete Online Application
  • Participants: Share information about Decode Duchenne with your doctor. If you have questions or want help to discuss the program with your doctor, get in touch with the Decode Duchenne team

Steps in the Decode Testing Process

  1. Healthcare provider submits the Decode Duchenne Application
  2. Decode Duchenne team member sends the approval and requisition to the provider
  3. Participant provides a sample (blood or saliva)
  4. Provider receives results and shares them with participant

Testing Provided

Decode Duchenne provides detection of deletions, duplications, and smaller point mutations via next generation sequencing (NGS). The program can also provide sequencing only for those who have already had negative deletion/duplication testing and familial mutation testing. Additionally, repeat testing is available for individuals tested with older technologies that did not analyze all exons in the Duchenne gene. The Decode Duchenne genetic counselors can help determine which tests are needed.

Additional Services

  • Sample shipping help: Specimen collection kits with free return shipping are available
  • Blood draw reimbursement: Decode Duchenne can reimburse the cost of the blood draw for participants when needed
  • Genetic counseling: Decode Duchenne genetic counselors are available to answer questions about genetic testing for Duchenne, regardless of whether or not the participant or provider has used the Decode Duchenne program. Common topics that the Decode Duchenne genetic counselors discuss include:
    • Testing for other family members, including carrier testing
    • Interpreting test results, including determining if a person’s genetic change would be amenable to mutation-specific therapies
    • Identifying educational and community support resources

Need Help?

Contact us

 

Decode Duchenne is administered by Parent Project Muscular Dystrophy and The Duchenne Registry. Decode Duchenne is sponsored by Sarepta Therapeutics and PTC Therapeutics. Click here to review PPMD’s policy on corporate support.