The overall 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 disorders include cervical dystonia (also known as torticollis), blepharospasm and related craniofacial dystonias, laryngeal dystonia (also known as spasmodic dysphonia), and limb dystonias (e.g writer's cramp, musician's dystonias). Also included are various combinations such as segmental, multifocal and generalized dystonias. The main objectives are to delineate more precisely the natural history of these disorders, to establish a biorepository for exploring biomarkers, to develop formal diagnostic guidelines, and to develop instruments to measure disease severity in treatment trials. Rather than rely on a fixed combination of expert centers, the Dystonia Coalition has an open-door policy that permits other centers to join the effort at any time according to their interests and capabilities. During its first funding cycle, the Dystonia Coalition's multidisciplinary team grew from 14 to 49 interested sites in North America and Europe, working together with 17 Patient Advocacy Groups (PAGs) on 3 Main Clinical Projects, a Pilot Projects Program, a Career Development (Training) Program, and several internet-based resources. During its second funding cycle, 2 of the Main Clinical Projects will be completed and a new one is to be added.
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| Cotton, Adam C; Bell, R B; Jinnah, H A (2018) Expert Opinion vs Patient Perspective in Treatment of Rare Disorders: Tooth Removal in Lesch-Nyhan Disease as an Example. JIMD Rep 41:25-27 |
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