Dystonia Coalition Projects (DCP)

This study is currently recruiting participants. (see Contacts and Locations)
Verified December 2015 by Emory University
National Institute of Neurological Disorders and Stroke (NINDS)
Office of Rare Diseases (ORD)
Dystonia Study Group
Information provided by (Responsible Party):
Hyder A. Jinnah, MD, PhD, Emory University
ClinicalTrials.gov Identifier:
First received: June 2, 2011
Last updated: December 3, 2015
Last verified: December 2015
Dystonia is a disorder characterized by excessive involuntary contraction of muscles with repetitive and patterned movements. The primary focal 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 primary focal dystonias and to develop and validate various dystonia rating scales.


Study Type: Observational
Official Title: Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia

Resource links provided by NLM:

Further study details as provided by Emory University:

Primary Outcome Measures:
  • Observational [ Time Frame: 7 years ] [ Designated as safety issue: No ]
    There is no primary outcome measure as this is an observational study.

Biospecimen Retention:   Samples With DNA
Whole blood, DNA, white blood cells, cell lines

Estimated Enrollment: 5000
Study Start Date: January 2011
Estimated Primary Completion Date: October 2017 (Final data collection date for primary outcome measure)
Cervical dystonia
People diagnosed with cervical dystonia
Laryngeal dystonia
People diagnosed with laryngeal dystonia
Other voice disorders
People diagnosed with a voice disorder other than laryngeal dystonia
Cranial dystonia
People diagnosed with cranial dystonia
Oromandibular dystonia
People diagnosed with oromandibular dystonia
Limb dystonia
People diagnosed with limb dystonia
All other dystonias
People diagnosed with any isolated dystonia not listed in descriptions of other cohorts

Detailed Description:

This collaborative, international effort has two primary goals. The first is to create a biospecimen repository and associated clinical database to be used as a resource for dystonia and related disease research. The second goal is to create and validate various rating scales for focal dystonias to be used during a typical clinical examination. 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 videotaped, complete some questionnaires, and donate a blood sample. A study visit will take between 45 minutes and 1 hour depending upon which portions of the study a subject completes. A subset of subjects will be asked to return no more often than once a year for a one hour follow-up visit.


Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
People with dystonia are eligible to participate as long as they are above age 18 and fit the eligibility criteria. The coordinator at the site you contact can tell you more about this.

Inclusion Criteria:

  • Diagnosed with primary dystonia
  • To be included in laryngeal dystonia group, nasolaryngoscopy (voice box exam) must have been completed to confirm diagnosis

Exclusion Criteria:

  • Any evidence of a secondary cause for dystonia
  • Less than 2 months since last botulinum toxin injection
  • 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
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01373424

Contact: Ami R Rosen, MS, CGC 404-727-3381 arosen3@emory.edu

  Hide Study Locations
United States, Alabama
University of Alabama, Birmingham Recruiting
Birmingham, Alabama, United States, 35233
Contact: Jeff Worrell    205-996-4034    jworrell@uab.edu   
Principal Investigator: Natividad Stover, MD         
Sub-Investigator: David Standaert, MD, PhD         
United States, Arizona
Mayo Clinic, Arizona Recruiting
Scottsdale, Arizona, United States, 85259
Contact: Amy Duffy    480-301-4750    Duffy.Amy@mayo.edu   
Principal Investigator: Charles Adler, MD, PhD         
United States, California
Parkinson's and Movement Disorders Institute Recruiting
Fountain Valley, California, United States, 72708
Contact: Khanh Nguyen, RN    714-378-5033    knguyen@pdmi.org   
Principal Investigator: Daniel Truong, MD         
University of California, San Diego Recruiting
La Jolla, California, United States, 92037
Contact: Lissette Moreno    858-822-1399    l3moreno@ucsd.edu   
Principal Investigator: Fatta Nahab, MD         
United States, Colorado
University of Colorado, Denver Recruiting
Denver, Colorado, United States, 80045
Contact: Erika Shelton    303-724-5865    erika.shelton@ucdenver.edu   
Principal Investigator: Brian D. Berman, MD         
United States, Florida
University of Florida, Gainesville Recruiting
Gainesville, Florida, United States, 32611
Contact: Simone Roberts    352-273-5566    simone.roberts@neurology.ufl.edu   
Principal Investigator: Ramon Rodriguez, MD         
Sub-Investigator: Michael Okun, MD         
United States, Georgia
Emory University Recruiting
Atlanta, Georgia, United States, 30322
Contact: Ami R Rosen, MS, CGC    404-727-3381    arosen3@emory.edu   
Principal Investigator: H. A. Jinnah, MD, PhD         
Sub-Investigator: Stewart Factor, DO         
Sub-Investigator: Michael Johns, MD         
United States, Illinois
Rush University Recruiting
Chicago, Illinois, United States, 60612
Contact: Tracy Waliczek    312-563-2848    Tracy_Waliczek@rush.edu   
Principal Investigator: Cynthia Comella, MD         
Principal Investigator: Christopher Goetz, MD         
University of Chicago Recruiting
Chicago, Illinois, United States, 60637
Contact: Joan Young, CCRP    773-834-1688    jyoung@neurology.bsd.uchicago.edu   
Principal Investigator: Tao Xie, PhD         
United States, Iowa
University of Iowa Recruiting
Iowa City, Iowa, United States, 52242
Contact: Jeri Sieren, RN    319-356-8744    jeri-sieren@uiowa.edu   
Principal Investigator: Ergun Uc, MD         
United States, Maryland
University of Maryland Recruiting
Baltimore, Maryland, United States, 21201
Contact: Katherine Holmes    410-328-4892    kholmes@som.umaryland.edu   
Contact: Samantha Gibson    410-328-4349    sagibson@som.umaryland.edu   
Principal Investigator: Stephen Reich, MD         
Johns Hopkins University Recruiting
Baltimore, Maryland, United States, 21287
Contact: Becky Dunlop, RN, BSN    410-955-8795    rdunlop@jhmi.edu   
Principal Investigator: Zoltan Mari, MD         
National Institutes of Health Recruiting
Bethesda, Maryland, United States, 20892
Contact: Vesper Ramos, MD       ramosvl@mail.nih.gov   
Contact: Gayle McCrossin    301-480-2286    mccrossing@ninds.nih.gov   
Principal Investigator: Mark Hallett, MD         
Parkinson's and Movement Disorders Center of Maryland Recruiting
Elkridge, Maryland, United States, 21075
Contact: Nicole Saunders, RN    443-755-0030    nsaunders@pdmdcenter.com   
Principal Investigator: Stephen Grill, MD, PhD         
United States, Massachusetts
Beth Israel Deaconess Medical Center Recruiting
Boston, Massachusetts, United States, 02215
Contact: Max Newlon    617-667-4746    mnewlong@bidmc.harvard.edu   
Principal Investigator: Ludy Shih, MD         
Lahey Hospital and Medical Center Recruiting
Burlington, Massachusetts, United States, 01805
Contact: Nick Ventura    781-744-3216    nicholas.ventura@lahey.org   
Principal Investigator: Julie Leegwater-Kim, MD, PhD         
United States, Missouri
Washington University in St. Louis Recruiting
St. Louis, Missouri, United States, 63110
Contact: Jo Wright    314-362-7148    wrightl@npg.wustl.edu   
Principal Investigator: Joel Perlmutter, MD         
Sub-Investigator: Randy Paniello, MD         
United States, New Mexico
University of New Mexico Recruiting
Albuquerque, New Mexico, United States, 87113
Contact: Colleen Frangos    505-272-8740    CEFrangos@salud.unm.edu   
Principal Investigator: Sarah Pirio Richardson, MD         
United States, New York
Beth Israel Medical Center Recruiting
New York, New York, United States, 10003
Contact: Emily Muller, CCRP    212-844-6571    emuller@chpnet.org   
Principal Investigator: William Lawrence Severt, MD         
Mount Sinai Medical Center Recruiting
New York, New York, United States, 10029
Contact: Joan Bratton    212-241-2477    joan.bratton@mssm.edu   
Principal Investigator: Steven Frucht, MD         
University of Rochester Recruiting
Rochester, New York, United States, 14618
Contact: Michael Bull    585-275-2367    MichaelT_Bull@urmc.rochester.edu   
Principal Investigator: Richard Barbano, MD, PhD         
United States, North Carolina
Wake Forest Recruiting
Winston Salem, North Carolina, United States, 27157
Contact: Janet Hutchens, BS, CCRC    336-716-1715    jahutche@wakehealth.edu   
Principal Investigator: Allison Brashear, MD         
Sub-Investigator: Ihtsham Haq, MD         
Sub-Investigator: Mustafa Siddiqui, MD         
Sub-Investigator: Francis Walker, MD         
United States, North Dakota
Sanford Health - Fargo Recruiting
Fargo, North Dakota, United States, 58103
Contact: Tish Skarloken    701-234-4091    patricia.skarloken@sanfordhealth.org   
Principal Investigator: Tanya Harlow, MD         
United States, Ohio
University of Cincinnati Recruiting
Cincinnati, Ohio, United States, 45219
Contact: Christopher Laber    513-558-0169    laberca2@ucmail.uc.edu   
Principal Investigator: Alberto Espay, MD, MSc         
Sub-Investigator: Fredy Revilla, MD         
United States, Tennessee
University of Tennessee Recruiting
Memphis, Tennessee, United States, 38163
Contact: Wenli Lu    901-448-6180    wlu8@uthsc.edu   
Principal Investigator: Mark S. LeDoux, MD, PhD         
United States, Texas
Baylor College of Medicine Recruiting
Houston, Texas, United States, 77030
Contact: Lea Kiefer    713-798-3951    kiefer@bcm.edu   
Principal Investigator: Laura Marsh, MD         
Sub-Investigator: Joseph Jankovic, MD         
Sub-Investigator: Salah Qureshi, MD         
University of Texas Completed
Houston, Texas, United States, 77030
United States, Virginia
James Madison University Completed
Harrisonburg, Virginia, United States, 22807
Virginia Commonwealth University Recruiting
Richmond, Virginia, United States, 23298
Contact: Ginger Norris, MGC    804-662-5300    vwnorris@vcu.edu   
Principal Investigator: Claudia Testa, MD, PhD         
United States, Washington
Booth Gardner Parkinson's Care Center Recruiting
Kirkland, Washington, United States, 98034
Contact: Carey Gonzales    425-899-5374    CLGonzales@evergreenhealth.com   
Principal Investigator: Pinky Agarwal, MD, FAAN         
United States, Wisconsin
Medical College of Wisconsin Completed
Milwaukee, Wisconsin, United States, 53226
Westmead Hospital Recruiting
Westmead, Australia
Contact: Jane Griffith    +61 2 98456793    jane.griffith@health.nsw.gov.au   
Principal Investigator: Victor Fung, MD         
Canada, Alberta
University of Alberta Recruiting
Edmonton, Alberta, Canada, T6G 2B7
Contact: Paul McCann    780-407-1614    paul.mccann@albertahealthservices.ca   
Principal Investigator: Oksana Suchowersky, MD         
Canada, Ontario
Toronto Western Hospital Recruiting
Toronto, Ontario, Canada, MST 258
Contact: Brandon Rothberg    416-603-5800 ext 3120    brothber@uhnresearch.ca   
Principal Investigator: Susan Fox, MD, PhD         
Sub-Investigator: Mateusz Zurowski, MD         
Canada, Quebec
Centre Hospitalier de l'Universite de Montreal Recruiting
Montreal, Quebec, Canada, H2C 4M1
Contact: Monica Beland    514-890-8000 ext 26512    monica.beland.chum@ssss.gouv.qc.ca   
Principal Investigator: Sylvain Chouinard, MD, FRCPc         
Hopital de la Salpetriere Recruiting
Paris, France
Contact: Sophie Lavault    +33142167717    sophie.lavault@psl.aphp.fr   
Principal Investigator: Marie Vidailhet, MD         
Principal Investigator: Emmanuel Roze, MD         
University of Luebeck Recruiting
Luebeck, Germany, 23562
Contact: Alexander Schmidt    +49-451-2903-354    alexander.schmidt@neuro.uni-luebeck.de   
Principal Investigator: Christine Klein, MD         
University of Rome Recruiting
Rome, Italy
Contact: Giovanni Fabbrini, MD    390-649-914-700    giovanni.fabbrini@uniroma1.it   
Principal Investigator: Alfredo Berardelli, MD         
United Kingdom
University College London Institute of Neurology Recruiting
London, United Kingdom, WC1N 3BG
Contact: Amit Batla, MD    0203 448 8607    amit.batla@uclh.nhs.uk   
Principal Investigator: Kailash Bhatia, FRCP         
Sponsors and Collaborators
Hyder A. Jinnah, MD, PhD
National Institute of Neurological Disorders and Stroke (NINDS)
Office of Rare Diseases (ORD)
Dystonia Study Group
Principal Investigator: H. A. Jinnah, MD, PhD Emory University
  More Information

Additional Information:
Responsible Party: Hyder A. Jinnah, MD, PhD, Principal Investigator, Emory University
ClinicalTrials.gov Identifier: NCT01373424     History of Changes
Other Study ID Numbers: IRB00046266  U54TR001456  RDCRN#6301  U54NS065701 
Study First Received: June 2, 2011
Last Updated: December 3, 2015
Health Authority: United States: Institutional Review Board
Canada: Ethics Review Committee
Italy: Ethics Committee
France: Committee for the Protection of Personnes
Germany: Ethics Commission
Australia: Human Research Ethics Committee
United Kingdom: National Health Service

Keywords provided by Emory University:
Observational study
Cross-sectional and Prospective study
Cohort and case-control study

Additional relevant MeSH terms:
Dystonic Disorders
Central Nervous System Diseases
Movement Disorders
Nervous System Diseases
Neurologic Manifestations
Signs and Symptoms

ClinicalTrials.gov processed this record on April 27, 2016