Dystonia Coalition (DC)

Dystonia syndromes are disorders that cause certain regions of the body to have uncontrollable movements, including twisting, spasms, repetitive shaking, or jerking. The most common dystonia disorders affect the head and neck, eyelids, vocal cords, hands, forearms, and sometimes the entire body. The overall goal of the Dystonia Coalition is to accelerate progress in dystonia research. Specific aims include understanding the natural history of dystonia syndromes, crafting formal diagnostic guidelines for these syndromes, creating a bank of DNA samples for dystonia research, and developing different ways to measure the severity of each type of dystonia.

The Dystonia Coalition (DC) 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). DC is funded under grant number U54NS116025 as a collaboration between NCATS and the National Institute of Neurological Disorders and Stroke (NINDS). 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.