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.

Agency
National Institute of Health (NIH)
Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Type
Specialized Center--Cooperative Agreements (U54)
Project #
5U54NS065701-03
Application #
8145289
Study Section
Special Emphasis Panel (ZRG1-HOP-Y (50))
Program Officer
Sieber, Beth-Anne
Project Start
2009-09-30
Project End
2014-08-31
Budget Start
2011-09-01
Budget End
2012-08-31
Support Year
3
Fiscal Year
2011
Total Cost
$1,247,039
Indirect Cost
Name
Emory University
Department
Neurology
Type
Schools of Medicine
DUNS #
066469933
City
Atlanta
State
GA
Country
United States
Zip Code
30322
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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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