Resources

PPMD AND THE DUCHENNE REGISTRY

• 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.
• Join The Duchenne Registry
  Join The Duchenne Registry, a patient-reported international registry for Duchenne and Becker muscular dystrophy. Share your data and you will become a citizen scientist by helping to advance research and treatments for Duchenne.

DECODE PROGRAM FORMS

• Decode Duchenne Carrier Testing
  Providers: Complete the carrier/asymptomatic testing requisition and send via secure email (decode@parentprojectmd.org) or fax (404-935-0636) to the Decode Duchenne genetic counselors. If approved, we will request a collection kit for your patient. If not, we will reach out for additional details.
• Decode Duchenne Test Requisition Form
  Providers: Download the Decode Duchenne Test Requisition Form. This TRF is only for diagnostic testing (not carrier testing).
• Provider Frequently Asked Questions
  View our Provider FAQs
• Patient Frequently Asked Questions
  View our Patient FAQs
• Decode Duchenne Flyer
  Download this flyer to share with your local healthcare provider (click here for the Spanish version)

SPECIMEN SHIPPING KIT REQUEST

• Click here to request a kit on the Revvity Omics website.

GENETIC COUNSELING AND EDUCATIONAL RESOURCES

• Variant-Specific Therapies
  Learn more about the variant-specific therapies that are available or on the horizon for Duchenne and which variants are likely amenable to these therapies
• Understanding Genetic Testing for Duchenne
  Explore PPMD’s educational section about understanding genetic testing
• Genetic Counseling for Duchenne and Becker

CLINICAL TRIALS

• Duchenne Drug Development Pipeline
  Explore PPMD’s drug development pipeline to learn more about therapies in development for Duchenne
• Clinical Trials Overview
  Explore PPMD’s educational section about clinical trials
• Current Clinical Trials
  Explore family-friendly resources that answer frequently asked questions for actively recruiting clinical trials

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.

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