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.

Agency
National Institute of Health (NIH)
Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Type
Specialized Center--Cooperative Agreements (U54)
Project #
2U54NS065701-06
Application #
8765278
Study Section
Special Emphasis Panel ()
Program Officer
Sieber, Beth-Anne
Project Start
2009-09-30
Project End
2015-08-31
Budget Start
2014-09-30
Budget End
2015-08-31
Support Year
6
Fiscal Year
2014
Total Cost
$616,976
Indirect Cost
$77,003
Name
Emory University
Department
Neurology
Type
Schools of Medicine
DUNS #
066469933
City
Atlanta
State
GA
Country
United States
Zip Code
30322
Bologna, Matteo; Paparella, Giulia; Fabbrini, Andrea et al. (2016) Effects of cerebellar theta-burst stimulation on arm and neck movement kinematics in patients with focal dystonia. Clin Neurophysiol 127:3472-3479
Fraint, Avram; Vittal, Padmaja; Comella, Cynthia (2016) Considerations on patient-related outcomes with the use of botulinum toxins: is switching products safe? Ther Clin Risk Manag 12:147-54
Paudel, Reema; Li, Abi; Hardy, John et al. (2016) DYT6 Dystonia: A Neuropathological Study. Neurodegener Dis 16:273-8
LeDoux, Mark S; Vemula, Satya R; Xiao, Jianfeng et al. (2016) Clinical and genetic features of cervical dystonia in a large multicenter cohort. Neurol Genet 2:e69
Jinnah, H A; Factor, Stewart (2016) The role of polymyography in the treatment of cervical dystonia: the authors reply. J Neurol 263:1665
Norris, Scott A; Jinnah, H A; Espay, Alberto J et al. (2016) Clinical and demographic characteristics related to onset site and spread of cervical dystonia. Mov Disord 31:1874-1882
Jinnah, H A; Goodmann, Emily; Rosen, Ami R et al. (2016) Botulinum toxin treatment failures in cervical dystonia: causes, management, and outcomes. J Neurol 263:1188-94
Jinnah, H A (2016) Locus Pocus. Mov Disord 31:1759-1760
Justicz, Natalie; Hapner, Edie R; Josephs, Joshua S et al. (2016) Comparative effectiveness of propranolol and botulinum for the treatment of essential voice tremor. Laryngoscope 126:113-7
Comella, Cynthia L; Perlmutter, Joel S; Jinnah, Hyder A et al. (2016) Clinimetric testing of the comprehensive cervical dystonia rating scale. Mov Disord 31:563-9

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