The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias
- Conditions
- Dystonia
- Registration Number
- NCT01373424
- Lead Sponsor
- Emory University
- 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.
- Detailed Description
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.
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 3265
- 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)
- 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
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Observational 7 years There is no primary outcome measure as this is an observational study.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (42)
University of Maryland
🇺🇸Baltimore, Maryland, United States
Johns Hopkins University
🇺🇸Baltimore, Maryland, United States
Beth Israel Deaconess Medical Center
🇺🇸Boston, Massachusetts, United States
University of Pennsylvania, Parkinson's Disease and Movement Disorders Center
🇺🇸Philadelphia, Pennsylvania, United States
Houston Methodist Neurological Institute
🇺🇸Houston, Texas, United States
University of Texas
🇺🇸Houston, Texas, United States
James Madison University
🇺🇸Harrisonburg, Virginia, United States
Toronto Western Hospital
🇨🇦Toronto, Ontario, Canada
Parkinson's and Movement Disorders Institute
🇺🇸Fountain Valley, California, United States
University of Texas, Southwestern
🇺🇸Dallas, Texas, United States
Wake Forest
🇺🇸Winston-Salem, North Carolina, United States
Virginia Commonwealth University
🇺🇸Richmond, Virginia, United States
University of California, San Diego
🇺🇸La Jolla, California, United States
University of Florida, Gainesville
🇺🇸Gainesville, Florida, United States
Mayo Clinic, Arizona
🇺🇸Scottsdale, Arizona, United States
University of Chicago
🇺🇸Chicago, Illinois, 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
University of Iowa
🇺🇸Iowa City, Iowa, United States
University of Tennessee
🇺🇸Memphis, Tennessee, United States
Emory University
🇺🇸Atlanta, Georgia, United States
University of Rome
🇮🇹Rome, Italy
Rush University
🇺🇸Chicago, Illinois, United States
Hopital de la Salpetriere
🇫🇷Paris, France
University of New Mexico
🇺🇸Albuquerque, New Mexico, United States
University of Alberta
🇨🇦Edmonton, Alberta, Canada
University College London Institute of Neurology
🇬🇧London, United Kingdom
Washington University in St. Louis
🇺🇸Saint Louis, Missouri, United States
University Hospital of Schleswig-Holstein
🇩🇪Luebeck, Germany
Parkinson's and Movement Disorders Center of Maryland
🇺🇸Elkridge, Maryland, United States
Sanford Health - Fargo
🇺🇸Fargo, North Dakota, United States
Baylor College of Medicine
🇺🇸Houston, Texas, United States
Booth Gardner Parkinson's Care Center
🇺🇸Kirkland, Washington, United States
Westmead Hospital
🇦🇺Westmead, Australia
Centre Hospitalier de l'Universite de Montreal
🇨🇦Montreal, Quebec, Canada
University of Alabama, Birmingham
🇺🇸Birmingham, Alabama, United States
University of Cincinnati
🇺🇸Cincinnati, Ohio, United States
University of Colorado, Denver
🇺🇸Denver, Colorado, United States
National Institutes of Health
🇺🇸Bethesda, Maryland, United States
Medical College of Wisconsin
🇺🇸Milwaukee, Wisconsin, United States
Lahey Hospital and Medical Center
🇺🇸Burlington, Massachusetts, United States