Partners

The Duchenne Registry works tirelessly with multiple partners in the Duchenne community. Some of our partnerships are highlighted below:

 

TREAT-NMD Neuromuscular Network: The Duchenne Registry has been a member of the TREAT-NMD Neuromuscular Network since its inception in 2007. Several key data fields from The Duchenne Registry are shared with the TREAT-NMD International Neuromuscular Registry. Learn more

 

Duchenne Regulatory Science Consortium (D-RSC): The Duchenne Registry contributes all of the de-identified data to D-RSC of the Critical Path Institute, who is pooling data from multiple sources to develop a Duchenne disease progression model. Learn more

 

 

PCORnet: The Duchenne Registry was honored to be selected as one of the Patient-Powered Research Networks (PPRNs) in PCORnet, the National Patient-Centered Clinical Research Network. The Duchenne Registry has been a PPRN within PCORnet for both Phase 1 and 2 of PCORnet, from 2014 - 2018. Learn more

 

 

Decode Duchenne: PPMD and The Duchenne Registry partnered with pharmaceutical companies to launch and administer the Decode Duchenne free genetic testing program. The partnership began with Sarepta Therapeutics in 2013, and they continue to be the program’s founding sponsor. PTC Therapeutics also provides funding for the Decode Duchenne program. Learn more.

 

Certified Duchenne Care Centers: PPMD’s Certified Duchenne Care Centers (CDCCs) are active partners with The Duchenne Registry. Their expert clinicians provide the Registry with advice and guidance, and they encourage their patients and families to register. Learn more.

 

Duchenne Drug Development Roundtable: PPMD’s Duchenne Drug Development Roundtable (DDDR) of pharmaceutical partners provide valuable advice and guidance from the industry perspective. Learn more.