Dystonia Coalition- Administrative Core

行政单位项目总结 肌萎缩症联盟的主要目标是促进合作，以推进临床和 单纯性肌张力障碍综合征的翻译研究，以前被称为“原发”肌张力障碍。恐惧症 联盟包括在北美、欧洲、以色列和澳大利亚的49个不同中心的多名调查人员。 他们通过行政单位与几个患者权益倡导团体就四个主要临床问题进行合作 项目、试点项目计划和职业提升计划。主要目标是勾勒出 孤立肌张力障碍综合征的表型异质性和自然病史，以描绘个体 对当前治疗的反应的时间变化，以制定监测严重程度的客观措施， 建立探索生物标志物的生物库。行政股将负责 全面指导和协调该计划，包括协调其活动，确保有效 在其所有组件之间进行沟通，监控实现目标的进度，并维护系统 负责财政问责和资源分配。

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.