The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias



Status:Recruiting
Conditions:Neurology, Orthopedic
Therapuetic Areas:Neurology, Orthopedics / Podiatry
Healthy:No
Age Range:18 - Any
Updated:8/10/2018
Start Date:January 2011
End Date:August 2021
Contact:Adam Kassem
Email:akassem@emory.edu
Phone:404-727-3381

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Trial Summary
Trial Overview
Inclusion Criteria

Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia

Dystonia is a disorder characterized by excessive involuntary contraction of muscles with
repetitive and patterned movements. The isolated dystonias are the most common type of
dystonia and include Limb dystonias (like writer's cramp), Cervical dystonia (spasmodic
torticollis), Laryngeal dystonias (like spasmodic dysphonia), and Craniofacial dystonias
(like blepharospasm). The purpose of this study is to create resources to help learn more
about the isolated dystonias, myoclonus dystonia, and dopa-responsive dystonia and to develop
and validate various dystonia rating scales.

This collaborative, international effort has one primary goal. This is to create a
biospecimen repository and associated clinical database to be used as a resource for dystonia
and related disease research. Across sites, the investigators hope to enroll at least 5,000
adult patients.

Subjects of this study will be asked to complete a neurological exam which will be video
recorded, complete some questionnaires, and donate a blood sample. A study visit will take
between 45 minutes and 1 hour. All subjects will be asked to return every 1, 2, 3, or 4 years
for a one hour follow-up visit. People may participate in this study without agreeing to
participate in the follow-up visits.

Inclusion Criteria:

- Diagnosed with isolated dystonia or myoclonus dystonia or dopa-responsive dystonia

- To be included in laryngeal dystonia group, nasolaryngoscopy (voice box exam) must
have been completed to confirm diagnosis (this voice box exam is not part of the
study)

Exclusion Criteria:

- Any evidence of a secondary cause for dystonia (other than myoclonus dystonia or
dopa-responsive dystonia)

- Less than 2 months since last botulinum toxin injection

- Inability to provide informed consent

- Significant medical or neurological conditions that preclude completing the
neurological exam

- Significant physical or other condition that would confound diagnosis or evaluation,
other than dystonia or tremor
We found this trial at
35
sites
Houston Methodist Neurological Institute
Houston, Texas 77030
Principal Investigator: William G. Ondo, MD
Phone: 713-363-8390
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Emory University
201 Dowman Dr
Atlanta, Georgia 30303
(404) 727-6123
Principal Investigator: H. A. Jinnah, MD, PhD
Phone: 404-727-3381
Emory University Emory University, recognized internationally for its outstanding liberal artscolleges, graduate and professional schools,...
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Atlanta, GA
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Johns Hopkins University
3400 N Charles St
Baltimore, Maryland 21205
410-516-8000
Principal Investigator: Zoltan Mari, MD
Phone: 410-955-6672
Johns Hopkins University The Johns Hopkins University opened in 1876, with the inauguration of its...
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Baltimore, MD
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University of Alabama at Birmingham
1720 2nd Ave S
Birmingham, Alabama 35233
(205) 934-4011 
Principal Investigator: Natividad Stover, MD
Phone: 205-996-4034
University of Alabama at Birmingham The University of Alabama at Birmingham (UAB) traces its roots...
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Beth Israel Deaconess Medical Center
330 Brookline Ave
Boston, Massachusetts 02215
617-667-7000
Principal Investigator: Ludy Shih, MD
Phone: 617-667-4746
Beth Israel Deaconess Medical Center Beth Israel Deaconess Medical Center (BIDMC) is one of the...
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University of Chicago
5801 South Ellis Avenue
Chicago, Illinois 60637
 773.702.1234
Principal Investigator: Tao Xie, PhD
Phone: 773-834-1688
University of Chicago One of the world's premier academic and research institutions, the University of...
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Chicago, IL
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University of Florida Gainesville
Gainesville, Florida 32611
(352) 392-3261
Phone: 352-294-5434
University of Florida Gainesville UF has a long history of established programs in international education,...
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Baylor College of Medicine
1200 Moursund Street
Houston, Texas 77030
(713) 798-4951
Phone: 713-798-5120
Baylor College of Medicine Baylor College of Medicine in Houston, the only private medical school...
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University of Iowa
101 Jessup Hall
Iowa City, Iowa 52242
(319) 335-3500
Principal Investigator: Ergun Uc, MD
Phone: 319-356-8744
University of Iowa With just over 30,000 students, the University of Iowa is one of...
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University of Tennessee
920 Madison Ave
Memphis, Tennessee 38163
Principal Investigator: Mark S. LeDoux, MD, PhD
Phone: 901-448-6180
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Mount Sinai Hospital
1 Gustave L Levy Pl # 271
New York, New York 10029
 (212) 241-6500
Principal Investigator: Steven Frucht, MD
Phone: 212-241-2477
Mount Sinai Med Ctr Founded in 1852, The Mount Sinai Hospital is a 1,171-bed, tertiary-care...
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University of Rochester
60 Crittenden Blvd # 70
Rochester, New York 14642
(585) 275-2121
Principal Investigator: Richard Barbano, MD, PhD
Phone: 585-341-7515
University of Rochester The University of Rochester is one of the country's top-tier research universities....
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University of New Mexico
Albuquerque, New Mexico 87131
(505) 277-0111
Principal Investigator: Sarah Pirio Richardson, MD
Phone: 505-272-8740
University of New Mexico Founded in 1889 as New Mexico’s flagship institution, the University of...
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University of Maryland
Baltimore, Maryland 20742
(301) 405-1000
Principal Investigator: Stephen Reich, MD
Phone: 410-328-4892
University of Maryland As a globally-connected university offering a world-class education, the University of Maryland...
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National Institutes of Health
Bethesda, Maryland 20892
Principal Investigator: Mark Hallett, MD
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Bethesda, MD
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Lahey Hospital and Medical Center
Burlington, Massachusetts 01805
Principal Investigator: Julie Leegwater-Kim, MD, PhD
Phone: 781-744-3216
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Burlington, MA
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Rush University
Chicago, Illinois 60612
Principal Investigator: Cynthia Comella, MD
Phone: 312-942-4500
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Chicago, IL
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University of Cincinnati
2600 Clifton Ave
Cincinnati, Ohio 45267
(513) 556-6000
Principal Investigator: Alberto Espay, MD, MSc
Phone: 513-558-0505
University of Cincinnati The University of Cincinnati offers students a balance of educational excellence and...
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University of Texas Southwestern
Dallas, Texas 75390
Principal Investigator: Pravin Khemani, MD
Phone: 214-648-0212
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University of Colorado at Denver
Denver, Colorado 80291
Principal Investigator: Brian D. Berman, MD
Phone: 303-724-5865
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Parkinson's and Movement Disorders Center of Maryland
Elkridge, Maryland 21075
Principal Investigator: Stephen Grill, MD, PhD
Phone: 443-755-0030
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Sanford Health - Fargo
Fargo, North Dakota 58103
Principal Investigator: Tanya Harlow, MD
Phone: 701-234-4021
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Fargo, ND
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Parkinson's and Movement Disorders Institute
Fountain Valley, California 72708
Principal Investigator: Daniel Truong, MD
Phone: 714-378-5021
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Fountain Valley, CA
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James Madison University
Harrisonburg, Virginia 22807
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Harrisonburg, VA
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The University Of Texas
Houston, Texas 77030
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Houston, TX
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Booth Gardner Parkinson's Care Center
Kirkland, Washington 98034
Principal Investigator: Pinky Agarwal, MD, FAAN
Phone: 425-899-5374
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The University of California, San Diego
9500 Gilman Dr
La Jolla, California 92093
(858) 534-2230
Principal Investigator: Fatta Nahab, MD
Phone: 858-822-1399
The University of California, San Diego UC San Diego is an academic powerhouse and economic...
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Medical College of Wisconsin
8701 W Watertown Plank Rd
Milwaukee, Wisconsin
(414) 955-8296
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Mount Sinai Beth Israel
New York, New York 10003
Principal Investigator: Rachel Saunders-Pullman, MD, MPH
Phone: 212-844-8713
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University of Pennsylvania, Parkinson's Disease and Movement Disorders Center
Philadelphia, Pennsylvania 19107
Principal Investigator: Andres Deik, MD
Phone: 215-829-5299
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Philadelphia, PA
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Virginia Commonwealth University
Richmond, Virginia 23298
(804) 828-0100
Principal Investigator: Claudia Testa, MD, PhD
Phone: 804-628-1820
Virginia Commonwealth University Since our founding as a medical school in 1838, Virginia Commonwealth University...
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Washington University in St. Louis
Saint Louis, Missouri 63110
Principal Investigator: Joel Perlmutter, MD
Phone: 314-362-7148
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Mayo Clinic Arizona
13400 E. Shea Blvd.
Scottsdale, Arizona 85259
480-301-8000
Principal Investigator: Charles Adler, MD, PhD
Phone: 480-301-4750
Mayo Clinic Arizona Mayo Clinic in Arizona provides medical care for thousands of people from...
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Westmead Hospital
Westmead, 2145
Principal Investigator: Victor Fung, MD
Phone: +61 2 98456793
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Wake Forest
Winston-Salem, North Carolina 27157
Principal Investigator: Allison Brashear, MD
Phone: 336-716-9056
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Winston-Salem, NC
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