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

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

sites

Mount Sinai Beth Israel

New York, New York 10003

Principal Investigator: Rachel Saunders-Pullman, MD, MPH

Phone: 212-844-8713

from

New York, NY

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,...

from

Atlanta, GA

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...

from

Baltimore, MD

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...

from

Birmingham, AL

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...

from

Boston, MA

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...

from

Chicago, IL

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,...

from

Gainesville, FL

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...

from

Houston, TX

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...

from

Iowa City, IA

University of Tennessee

920 Madison Ave
Memphis, Tennessee 38163

Principal Investigator: Mark S. LeDoux, MD, PhD

Phone: 901-448-6180

from

Memphis, TN

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...

from

New York, NY

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....

from

Rochester, NY

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...

from

Albuquerque, NM

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...

from

Baltimore, MD

National Institutes of Health

Bethesda, Maryland 20892

Principal Investigator: Mark Hallett, MD

from

Bethesda, MD

Lahey Hospital and Medical Center

Burlington, Massachusetts 01805

Principal Investigator: Julie Leegwater-Kim, MD, PhD

Phone: 781-744-3216

from

Burlington, MA

Rush University

Chicago, Illinois 60612

Principal Investigator: Cynthia Comella, MD

Phone: 312-942-4500

from

Chicago, IL

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...

from

Cincinnati, OH

University of Texas Southwestern

Dallas, Texas 75390

Principal Investigator: Pravin Khemani, MD

Phone: 214-648-0212

from

Dallas, TX

University of Colorado at Denver

Denver, Colorado 80291

Principal Investigator: Brian D. Berman, MD

Phone: 303-724-5865

from

Denver, CO

Parkinson's and Movement Disorders Center of Maryland

Elkridge, Maryland 21075

Principal Investigator: Stephen Grill, MD, PhD

Phone: 443-755-0030

from

Elkridge, MD

Sanford Health - Fargo

Fargo, North Dakota 58103

Principal Investigator: Tanya Harlow, MD

Phone: 701-234-4021

from

Fargo, ND

Parkinson's and Movement Disorders Institute

Fountain Valley, California 72708

Principal Investigator: Daniel Truong, MD

Phone: 714-378-5021

from

Fountain Valley, CA

James Madison University

Harrisonburg, Virginia 22807

from

Harrisonburg, VA

The University Of Texas

Houston, Texas 77030

from

Houston, TX

Houston Methodist Neurological Institute

Houston, Texas 77030

Principal Investigator: William G. Ondo, MD

Phone: 713-363-8390

from

Houston, TX

Booth Gardner Parkinson's Care Center

Kirkland, Washington 98034

Principal Investigator: Pinky Agarwal, MD, FAAN

Phone: 425-899-5374

from

Kirkland, WA

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...

from

La Jolla, CA

Medical College of Wisconsin

8701 W Watertown Plank Rd
Milwaukee, Wisconsin

(414) 955-8296

Medical College of Wisconsin The Medical College (MCW) of Wisconsin is a major national research...

from

Milwaukee, WI

University of Pennsylvania, Parkinson's Disease and Movement Disorders Center

Philadelphia, Pennsylvania 19107

Principal Investigator: Andres Deik, MD

Phone: 215-829-5299

from

Philadelphia, PA

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...

from

Richmond, VA

Washington University in St. Louis

Saint Louis, Missouri 63110

Principal Investigator: Joel Perlmutter, MD

Phone: 314-362-7148

from

Saint Louis, MO

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...

from

Scottsdale, AZ

Westmead Hospital

Westmead, 2145

Principal Investigator: Victor Fung, MD

Phone: +61 2 98456793

from

Westmead,

Wake Forest

Winston-Salem, North Carolina 27157

Principal Investigator: Allison Brashear, MD

Phone: 336-716-9056

from

Winston-Salem, NC

The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias

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