PPMD’s Decode Duchenne Program:
Resources

PPMD and The Duchenne Registry

  • Join The Duchenne Registry
    Join The Duchenne Registry, the national registry for Duchenne and Becker, and become part of a global research team working towards a cure.
  • Learn more about PPMD
    Parent Project Muscular Dystrophy (PPMD) is the largest non-profit organization in the United States focused specifically on Duchenne and Becker muscular dystrophy. Learn more about our mission to End Duchenne.

Decode Program Forms

  • Decode Duchenne Application
    Providers: submit this form for each participant who needs free testing through Decode Duchenne
  • Blood Draw Reimbursement Form
    Patients: submit this form if you received a bill for your Decode Duchenne blood draw that you cannot afford
  • Specimen Shipping Kit Request
    Providers or patients: please contact us if you need a specimen shipping kit, which provides supplies for obtaining a sample, packaging, and a return shipping label for your Decode Duchenne testing
  • Provider FAQ
    View our provider FAQs.

Genetic Counseling and Educational Resources

  • Mutation-Specific Therapies
    Learn more about the mutation-specific therapies that are on the horizon for Duchenne and which deletions are likely amenable to the exon-skipping therapies coming up next in the therapy-development pipeline
  • Understanding Genetic Testing for Duchenne
    Explore PPMD’s educational section about understanding genetic testing

Clinical Trials

  • Clinical Trials Overview
    Explore PPMD’s educational section about clinical trials
  • Current Clinical Trials FAQ sheets
    Explore family-friendly resources that answer frequently asked questions for each ongoing clinical trial

 

 

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.