Dystonia Coalition

肌张力障碍联盟的总体目标是制定一项计划，以促进合作， 肌张力障碍是一组以不自主运动为特征的神经系统疾病， 扭曲的动作和不自然的姿势肌张力障碍联盟包括多名研究人员， 在北美和欧洲的不同中心，与几个非专业患者支持一起工作 组织和研究基金会的三个主要临床项目，试点项目计划， 发展（培训）计划和一个互联网门户网站。主要临床项目1解决自然 影响特定身体部位和集体的最常见形式的原发性肌张力障碍的历史 包括约80%的所有肌张力障碍：颈部肌张力障碍（斜颈），喉肌张力障碍（痉挛性 发声障碍）、眼睑痉挛（眼周区域）、颅面肌张力障碍（上面部和下面部）和肢体 肌张力障碍（手/臂或脚/腿）。纵向临床数据将与生物样本库相关联， DMA和血清来描绘疾病状态的潜在生物标志物。主要临床项目2侧重于 开发可用于监测疾病进展和反应的综合评级工具 涉及最常见的局部肌张力障碍--颈部肌张力障碍的治疗。项目2中使用的方法 将作为其他不太常见的局灶性肌张力障碍的类似工具的开发指南。临床 项目3的重点是开发实用的临床工具，可用于明确诊断 痉挛性发音困难和与几种相关的语音障碍的辨别。它也将作为一个指南， 缺乏明确诊断工具的其他局灶性肌张力障碍，如眼睑痉挛或肢体痉挛 肌张力障碍肌张力障碍联盟将提供一个新颖而有价值的基础设施和环境， 用于加速临床研究，以寻求改善所有原发性局灶性肌张力障碍的治疗。

The overall goal of the Dystonia Coalition is to develop a program to facilitate collaborations that will advance the pace of clinical research for the dystonias, a group of neurological disorders characterized by involuntary twisting movements and unnatural posturing. The Dystonia Coalition encompasses multiple investigators at different centers in North America and Europe, working together with several lay patient support organizations and research foundations on three Main Clinical Projects, a Pilot Projects Program, a Development (Training) Program, and an internet portal. Main Clinical Project 1 addresses the natural history of the most common forms of primary dystonia that affect specific body parts and collectively comprise approximately 80% of all dystonias: cervical dystonia (torticollis), laryngeal dystonia (spasmodic dysphonia), blepharospasm (peri-ocular regions), craniofacial dystonia (upper and lower face), and limb dystonias (hand/arm or foot/leg). Longitudinal clinical data will be linked with a biospecimen repository for DMA and serum to delineate potential biomarkers of disease status. Main Clinical Project 2 focuses on the development of comprehensive rating tools that can be used to monitor disease progression and responses to treatments for cervical dystonia, the most common of the focal dystonias. The methods used in Project 2 will serve as a guide for the development of similar tools for the other less common focal dystonias. Clinical Project 3 focuses on the development of practical clinical tools that can be used for definitive diagnosis of spasmodic dysphonia and discrimination from several related voice disorders. It too will serve as a guide for other focal dystonias where definitive diagnostic tools still are lacking, such as blepharospasm or limb dystonias. The Dystonia Coalition will provide a novel and valuable infrastructure and environment that will be used to accelerate clinical research in pursuit of improved treatment for all of the primary focal dystonias.