Dystonia Coalition- Administrative Core

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ADMINISTRATIVE UNIT PROJECT SUMMARY The main goal of the Dystonia Coalition is to facilitate collaborations that advance the pace of clinical and translational research for isolated dystonia syndromes, previously known as “primary” dystonias. The Dystonia Coalition includes multiple investigators at 49 different centers in North America, Europe, Israel, and Australia. They work together with several patient advocacy groups through the Administrative Unit on 4 main Clinical Projects, a Pilot Projects Program, and a Career Enhancement Program. The main objectives are to delineate the phenotypic heterogeneity and natural history of the isolated dystonia syndromes, to delineate individual temporal variations in response to current treatments, to develop objective measures for monitoring severity, and to establish a biorepository for exploring biomarkers. The Administrative Unit will be responsible for the overall direction and coordination of the program including coordination of its activities, ensuring effective communication among all of its components, monitoring progress towards objectives, and maintaining a system for fiscal accountability and resource allocation.