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 Application
Providers: Submit this form ONLY for carrier testing or patients living in New York State (*Applications are no longer needed for diagnostic testing – providers can order directly on the PerkinElmer website or by downloading the test requisition below.*) - 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
SPECIMEN SHIPPING KIT REQUEST
- Click here to request a kit on the PerkinElmer website.
GENETIC COUNSELING AND EDUCATIONAL RESOURCES
- Mutation-Specific Therapies
Learn more about the mutation-specific therapies that are available or on the horizon for Duchenne and which mutations 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?
Contact a Decode Duchenne Genetic Counselor >
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.
