Dystonia Coalition

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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.