The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias
NCT ID: NCT01373424
Last Updated: 2020-10-26
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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COMPLETED
3265 participants
OBSERVATIONAL
2011-01-31
2020-09-30
Brief Summary
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Detailed Description
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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.
Conditions
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Study Design
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OTHER
OTHER
Study Groups
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Cervical dystonia
People diagnosed with cervical dystonia
No interventions assigned to this group
Laryngeal dystonia
People diagnosed with laryngeal dystonia
No interventions assigned to this group
Other voice disorders
People diagnosed with a voice disorder other than laryngeal dystonia - enrollment for this group is complete
No interventions assigned to this group
Craniofacial dystonia
People diagnosed with craniofacial dystonia (including blepharospasm, meige syndrome, and oromandibular dystonia)
No interventions assigned to this group
Limb dystonia
People diagnosed with limb dystonia
No interventions assigned to this group
All other isolated dystonias
People diagnosed with any isolated dystonia not listed in descriptions of other cohorts
No interventions assigned to this group
Myoclonus dystonia
People diagnosed with myoclonus dystonia
No interventions assigned to this group
Dopa-responsive dystonia
People diagnosed with dopa-responsive dystonia
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* 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
* 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
18 Years
ALL
No
Sponsors
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National Institute of Neurological Disorders and Stroke (NINDS)
NIH
Office of Rare Diseases (ORD)
NIH
Allergan
INDUSTRY
Dystonia Study Group
OTHER
Emory University
OTHER
Responsible Party
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Hyder A. Jinnah, MD, PhD
Principal Investigator
Principal Investigators
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H. A. Jinnah, MD, PhD
Role: PRINCIPAL_INVESTIGATOR
Emory University
Locations
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University of Alabama, Birmingham
Birmingham, Alabama, United States
Mayo Clinic, Arizona
Scottsdale, Arizona, United States
Parkinson's and Movement Disorders Institute
Fountain Valley, California, United States
University of California, San Diego
La Jolla, California, United States
University of Colorado, Denver
Denver, Colorado, United States
University of Florida, Gainesville
Gainesville, Florida, United States
Emory University
Atlanta, Georgia, United States
Rush University
Chicago, Illinois, United States
University of Chicago
Chicago, Illinois, United States
University of Iowa
Iowa City, Iowa, United States
University of Maryland
Baltimore, Maryland, United States
Johns Hopkins University
Baltimore, Maryland, United States
National Institutes of Health
Bethesda, Maryland, United States
Parkinson's and Movement Disorders Center of Maryland
Elkridge, Maryland, United States
Beth Israel Deaconess Medical Center
Boston, Massachusetts, United States
Lahey Hospital and Medical Center
Burlington, Massachusetts, United States
Washington University in St. Louis
St Louis, Missouri, United States
University of New Mexico
Albuquerque, New Mexico, United States
Mount Sinai Beth Israel
New York, New York, United States
Mount Sinai Medical Center
New York, New York, United States
University of Rochester
Rochester, New York, United States
Wake Forest
Winston-Salem, North Carolina, United States
Sanford Health - Fargo
Fargo, North Dakota, United States
University of Cincinnati
Cincinnati, Ohio, United States
University of Pennsylvania, Parkinson's Disease and Movement Disorders Center
Philadelphia, Pennsylvania, United States
University of Tennessee
Memphis, Tennessee, United States
University of Texas, Southwestern
Dallas, Texas, United States
Baylor College of Medicine
Houston, Texas, United States
Houston Methodist Neurological Institute
Houston, Texas, United States
University of Texas
Houston, Texas, United States
James Madison University
Harrisonburg, Virginia, United States
Virginia Commonwealth University
Richmond, Virginia, United States
Booth Gardner Parkinson's Care Center
Kirkland, Washington, United States
Medical College of Wisconsin
Milwaukee, Wisconsin, United States
Westmead Hospital
Westmead, , Australia
University of Alberta
Edmonton, Alberta, Canada
Toronto Western Hospital
Toronto, Ontario, Canada
Centre Hospitalier de l'Universite de Montreal
Montreal, Quebec, Canada
Hopital de la Salpetriere
Paris, , France
University Hospital of Schleswig-Holstein
Lübeck, , Germany
University of Rome
Rome, , Italy
University College London Institute of Neurology
London, , United Kingdom
Countries
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References
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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.
Provided Documents
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Document Type: Informed Consent Form
Related Links
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Dystonia Coalition website
Other Identifiers
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