The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias
DCP
Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia
4 other identifiers
observational
3,265
7 countries
42
Brief Summary
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jan 2011
Longer than P75 for all trials
42 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
January 1, 2011
CompletedFirst Submitted
Initial submission to the registry
June 2, 2011
CompletedFirst Posted
Study publicly available on registry
June 15, 2011
CompletedPrimary Completion
Last participant's last visit for primary outcome
September 30, 2020
CompletedStudy Completion
Last participant's last visit for all outcomes
September 30, 2020
CompletedOctober 26, 2020
October 1, 2020
9.8 years
June 2, 2011
October 23, 2020
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Observational
There is no primary outcome measure as this is an observational study.
7 years
Study Arms (8)
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 - enrollment for this group is complete
Craniofacial dystonia
People diagnosed with craniofacial dystonia (including blepharospasm, meige syndrome, and oromandibular dystonia)
Limb dystonia
People diagnosed with limb dystonia
All other isolated dystonias
People diagnosed with any isolated dystonia not listed in descriptions of other cohorts
Myoclonus dystonia
People diagnosed with myoclonus dystonia
Dopa-responsive dystonia
People diagnosed with dopa-responsive dystonia
Eligibility Criteria
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.
You may qualify if:
- 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)
You may not qualify if:
- 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
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Emory Universitylead
- National Institute of Neurological Disorders and Stroke (NINDS)collaborator
- Office of Rare Diseases (ORD)collaborator
- Allergancollaborator
- Dystonia Study Groupcollaborator
Study Sites (42)
University of Alabama, Birmingham
Birmingham, Alabama, 35233, United States
Mayo Clinic, Arizona
Scottsdale, Arizona, 85259, United States
Parkinson's and Movement Disorders Institute
Fountain Valley, California, 72708, United States
University of California, San Diego
La Jolla, California, 92037, United States
University of Colorado, Denver
Denver, Colorado, 80045, United States
University of Florida, Gainesville
Gainesville, Florida, 32611, United States
Emory University
Atlanta, Georgia, 30322, United States
Rush University
Chicago, Illinois, 60612, United States
University of Chicago
Chicago, Illinois, 60637, United States
University of Iowa
Iowa City, Iowa, 52242, United States
University of Maryland
Baltimore, Maryland, 21201, United States
Johns Hopkins University
Baltimore, Maryland, 21287, United States
National Institutes of Health
Bethesda, Maryland, 20892, United States
Parkinson's and Movement Disorders Center of Maryland
Elkridge, Maryland, 21075, United States
Beth Israel Deaconess Medical Center
Boston, Massachusetts, 02215, United States
Lahey Hospital and Medical Center
Burlington, Massachusetts, 01805, United States
Washington University in St. Louis
St Louis, Missouri, 63110, United States
University of New Mexico
Albuquerque, New Mexico, 87113, United States
Mount Sinai Beth Israel
New York, New York, 10003, United States
Mount Sinai Medical Center
New York, New York, 10029, United States
University of Rochester
Rochester, New York, 14618, United States
Wake Forest
Winston-Salem, North Carolina, 27157, United States
Sanford Health - Fargo
Fargo, North Dakota, 58103, United States
University of Cincinnati
Cincinnati, Ohio, 45219, United States
University of Pennsylvania, Parkinson's Disease and Movement Disorders Center
Philadelphia, Pennsylvania, 19107, United States
University of Tennessee
Memphis, Tennessee, 38163, United States
University of Texas, Southwestern
Dallas, Texas, 75390, United States
Baylor College of Medicine
Houston, Texas, 77030, United States
Houston Methodist Neurological Institute
Houston, Texas, 77030, United States
University of Texas
Houston, Texas, 77030, United States
James Madison University
Harrisonburg, Virginia, 22807, United States
Virginia Commonwealth University
Richmond, Virginia, 23298, United States
Booth Gardner Parkinson's Care Center
Kirkland, Washington, 98034, United States
Medical College of Wisconsin
Milwaukee, Wisconsin, 53226, United States
Westmead Hospital
Westmead, Australia
University of Alberta
Edmonton, Alberta, T6G 2B7, Canada
Toronto Western Hospital
Toronto, Ontario, MST 258, Canada
Centre Hospitalier de l'Universite de Montreal
Montreal, Quebec, H2C 4M1, Canada
Hopital de la Salpetriere
Paris, France
University Hospital of Schleswig-Holstein
Lübeck, 23562, Germany
University of Rome
Rome, Italy
University College London Institute of Neurology
London, WC1N 3BG, United Kingdom
Related Publications (1)
Patel N, Hanfelt J, Marsh L, Jankovic J; members of the Dystonia Coalition. Alleviating manoeuvres (sensory tricks) in cervical dystonia. J Neurol Neurosurg Psychiatry. 2014 Aug;85(8):882-4. doi: 10.1136/jnnp-2013-307316. Epub 2014 May 14.
PMID: 24828895DERIVED
Related Links
Biospecimen
Whole blood, DNA, white blood cells, cell lines
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
H. A. Jinnah, MD, PhD
Emory University
Study Design
- Study Type
- observational
- Observational Model
- OTHER
- Time Perspective
- OTHER
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Principal Investigator
Study Record Dates
First Submitted
June 2, 2011
First Posted
June 15, 2011
Study Start
January 1, 2011
Primary Completion
September 30, 2020
Study Completion
September 30, 2020
Last Updated
October 26, 2020
Record last verified: 2020-10
Data Sharing
- IPD Sharing
- Will share
Data is available to researchers with appropriate ethics board approvals. Researchers may contact the Dystonia Coalition PI or coordinator at Emory University or the RDCRN Data Management and Coordination Center for more information.