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
Jinnah, H A; Comella, Cynthia L; Perlmutter, Joel et al. (2017) Longitudinal studies of botulinum toxin in cervical dystonia: Why do patients discontinue therapy? Toxicon :
Conte, Antonella; Ferrazzano, Gina; Defazio, Giovanni et al. (2017) INCREASED BLINKING MAY BE A PRECURSOR OF BLEPHAROSPASM: A LONGITUDINAL STUDY. Mov Disord Clin Pract 4:733-736
Shakkottai, Vikram G; Batla, Amit; Bhatia, Kailash et al. (2017) Current Opinions and Areas of Consensus on the Role of the Cerebellum in Dystonia. Cerebellum 16:577-594
Kang, Sarah; Shaikh, Aasef G (2017) Acquired pendular nystagmus. J Neurol Sci 375:8-17
Li, Zhihao; Prudente, CecĂ­lia N; Stilla, Randall et al. (2017) Alterations of resting-state fMRI measurements in individuals with cervical dystonia. Hum Brain Mapp 38:4098-4108
Jinnah, H A; Neychev, Vladimir; Hess, Ellen J (2017) The Anatomical Basis for Dystonia: The Motor Network Model. Tremor Other Hyperkinet Mov (N Y) 7:506
Jinnah, H A; Alterman, Ron; Klein, Christine et al. (2017) Deep brain stimulation for dystonia: a novel perspective on the value of genetic testing. J Neural Transm (Vienna) 124:417-430
Sedov, Alexey; Popov, Valentin; Shabalov, Vladimir et al. (2017) Physiology of midbrain head movement neurons in cervical dystonia. Mov Disord 32:904-912
Defazio, Giovanni; Hallett, Mark; Jinnah, Hyder A et al. (2017) Blepharospasm 40 years later. Mov Disord 32:498-509
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

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