Carrier Testing

Decode Duchenne can provide FREE carrier testing to individuals who:

1. Are asymptomatic (showing no symptoms) and have a relative with Duchenne or Becker muscular dystrophy who has a known variant from previous genetic testing. (Individuals with a family history but no known genetic variant will be considered on a case-by-case basis); and
2. Are citizens or residents of the United States or Canada.

TO PROCEED WITH CARRIER TESTING:

• Providers – Please complete our Decode Duchenne application for each patient interested in carrier testing.
• Patients – Download this flyer to take to your local healthcare provider so they can coordinate genetic testing for you or your family member.

TESTING PROVIDED

Decode Duchenne provides free carrier testing at our designated laboratory, Revvity Omics. Healthcare providers must provide the known familial variant on the application form, and should submit a copy of the proband’s genetic test report to Revvity Omics. If the familial variant is unknown and the proband cannot be tested, Revvity can proceed with full DMD gene analysis via next generation sequencing (NGS). The Decode Duchenne genetic counselors can help determine which tests are needed.

ADDITIONAL SERVICES

• Sample shipping: Specimen collection kits (saliva, blood, or dried blood spot cards) with free return shipping are available
• 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
  • Interpreting test results, including determining if a person’s genetic change would be amenable to variant-specific therapies
  • Reviewing the inheritance of Duchenne and risks of recurrence in a family, as well as testing options for future pregnancies
  • Identifying educational and community support resources

NEED HELP?

Decode Duchenne is administered by Parent Project Muscular Dystrophy and The Duchenne Registry. Decode Duchenne is presented by Sarepta Therapeutics, Founding Partner; and supported by NS Pharma. Click here to review PPMD’s policy on corporate support.

Presented by Founding Partner

Supported by