WASHINGTON, March 6, 2026 /PRNewswire/ — PPMD is proud to share our partnership with the Cooperative International Neuromuscular Research Group (CINRG) to advance the expanded Duchenne Natural History Study (eDNHS) study. Joining PPMD in support of the eDNHS study is Insmed Gene Therapy, LLC; ITF Therapeutics, LLC; NS Pharma, Inc; Santhera Pharmaceuticals (Switzerland), Ltd; Sarepta Therapeutics, Inc; Solid Biosciences Inc; TRiNDS, LLC; and the University of California, Davis.
The eDNHS is an expanded continuation of the previous Duchenne Natural History Study, which ran from 2005-2016. The study is sponsored by the University of California, Davis and is active and enrolling at ten sites world-wide and includes sites in the United States (6), Canada (2), Australia (1) and India (1). The data resulting from this long-term observational study in individuals with Duchenne muscular dystrophy (DMD) benefits the Duchenne community by facilitating development and approval of novel therapies and improving global clinical practice and policy guidelines.
“We are thrilled that PPMD and six sponsors in the Duchenne therapeutic development space have joined together to advance our understanding of how Duchenne progresses in boys and men with Duchenne,” explains Craig McDonald, MD, one of the eDNHS Study Chairs and University of California, Davis Co-Principal Investigator. “As more therapies become available to those living with Duchenne it is critical we collect data to understand the therapeutic impact and how to implement best care for our families.”
Boys and men with Duchenne are eligible to participate in the eDNHS regardless of functional status, participation in active or past clinical trials, or current or past therapies and medications. Study visits take place approximately every six (6) months to align with standard of care visit schedules and include questionnaires, medical history and medication review, and strength and function testing.
To share more about the study, PPMD will host a community webinar on Wednesday, April 1st from 1:00-2:00PM EST. Registration for the webinar is available here.
About Parent Project Muscular Dystrophy
Duchenne is a genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.
We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won eight FDA approvals.
Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube.
About the Cooperative International Neuromuscular Research Group
The Cooperative International Neuromuscular Research Group (CINRG) is a consortium of medical and scientific investigators from academic and research centers who share the common goal of wanting to positively impact the lives of neuromuscular disease patients and their families by conducting well-controlled clinical studies. For more information, please visit the CINRG Website.
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SOURCE Parent Project Muscular Dystrophy (PPMD)
