The Cooperative International Neuromuscular Research Group (CINRG) has established the largest prospective multicenter natural history study to date in Duchenne muscular dystrophy (DMD), the CINRG Duchenne Natural History Study (DNHS). Since 2006 the study enrolled over 400 DMD boys and young men. Grants from the Department of Education (DOE), National Institutes of Health (NIH), Department of Defense (DOD), and Parent Project Muscular Dystrophy (PPMD) have enabled the collection of data and study visits from these 400+ participants for up to 10 years. The study is listed on clinicaltrials.gov at https://clinicaltrials.gov/ct2/show/NCT00468832.
Between 2006 and 2016 participants completed the following visits at participating CINRG centers from around the world:
|Calendar Year by Month||Baseline||Month 3||Month 6||Month 9||Month 12|
|Year 1: Ambulant||•||•||•||•||•|
|Year 1: Non–ambulant||•||•||•|
A very comprehensive list of clinical measures on each participant has been compiled, these include:
For information or to speak with our team about gaining access to data summaries or to discuss collaborations please email firstname.lastname@example.org.