North American Mitochondrial Disease Consortium (NAMDC)

Mitochondrial diseases affect approximately 1 in every 5,000 people. These diseases can cause muscle weakness, difficulty thinking, seizures, hearing and vision loss, digestive problems, learning disabilities, and organ failure. The North American Mitochondrial Disease Consortium (NAMDC) is a network of clinicians and researchers at 17 different clinical sites working to better understand mitochondrial diseases, improve diagnosis and explore treatments. In the past eight years, NAMDC has established a biorepository for tissue samples, a large registry and follow-up study with more than 1,500 patients, a website to educate and recruit patients, and studies to define the natural history of mitochondrial diseases. NAMDC also has initiated research studies that focus on several subtypes of mitochondrial diseases as well as a training program to educate the next generation of researchers. During the next few years, NAMDC will expand its clinical registry study and biorepository, perform advanced molecular diagnostic testing, conduct natural history and treatment studies, and continue training future clinician-scientists.

The North American Mitochondrial Disease Consortium (NAMDC) is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). NAMDC is funded under grant number U54NS078059 as a collaboration between NCATS, the National Institute of Neurological Disorders and Stroke (NINDS), the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the Office of Dietary Supplements (ODS). All RDCRN consortia are supported by the network’s Data Management and Coordinating Center (DMCC) (U2CTR002818). Funding support for the DMCC is provided by NCATS and NINDS.