Dystonia Coalition- Administrative Core

行政单位项目摘要 肌张力障碍联盟的主要目标是促进合作，推进临床和 针对孤立性肌张力障碍综合征的转化研究，以前称为“原发性”肌张力障碍。肌张力障碍 联盟包括来自北美，欧洲，以色列和澳大利亚49个不同中心的多名研究人员。 他们与几个病人倡导团体通过行政单位在4个主要的临床 项目，试点项目计划和职业提升计划。主要目标是描绘 孤立性肌张力障碍综合征的表型异质性和自然史，以描述个体 响应当前治疗的时间变化，开发用于监测严重程度的客观措施， 并建立一个探索生物标志物的生物储藏库。行政股将负责 全面指导和协调方案，包括协调其活动，确保有效 所有组成部分之间的沟通，监控目标的进展情况，并维护系统 财政问责制和资源分配。

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.