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CureDuchenne, the global nonprofit focused on finding a cure for Duchenne muscular dystrophy, will contribute patient-level clinical data to the Vivli platform, making it available to other researchers around the world. The data will augment existing studies that are available to request on the Vivli platform, which currently hosts data from over 4,700 trials.
Duchenne is the most common and lethal form of muscular dystrophy. Nearly 15,000 boys are living with the disease in the United States alone and over 300,000 worldwide.
“We’re committed to sharing data as a way to fuel treatment breakthroughs for muscular dystrophy. Vivli makes that possible.” said Debra Miller, founder and CEO, CureDuchenne.
CureDuchenne will make available individual participant data collected, after deidentification, from phase 2 and phase 3 clinical trials of the drug drisapersen, as well as observational studies.
“We’re delighted to have CureDuchenne join as a member of Vivli and make this valuable data available. We welcome researchers interested in Duchenne to visit the Vivli platform to access these datasets and potentially uncover new insights in muscular dystrophy,” said Rebecca Li, Vivli Executive Director. “The Vivli platform is a secure and user-friendly place to store and share data from clinical trials regardless of sponsor, and we look forward to welcoming more nonprofit research entities to Vivli.”