The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias

Completed

Conditions studied: Dystonia

In brief

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.

Key facts

Study ID

NCT01373424

Run by

Emory University

People needed

3265

Starts

2011-01-01

Expected to finish

2020-09-30

Last updated by the study team

2020-10-26

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

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

Where it is running

• 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

Full record on ClinicalTrials.gov

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