An observational study in Dystonia, sponsored by Emory University. Completed at 42 sites in 7 countries. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2020-10-26.
Sponsored by Emory University · Observational
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.
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.
319 studies on the registry are indexed under Dystonia; 56 are open to participants now.
This study's enrollment of 3,265 is above the median of 60 across 126 observational studies indexed under Dystonia.
Browse Dystonia studies →Emory University is the lead sponsor of 1,386 studies on the registry; 236 are open to participants now.
Of its 229 completed or terminated interventional studies of FDA-regulated products, 174 (76%) have results posted.
Counted across the registry records on this site, refreshed daily.
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.
Exclusion Criteria:
People diagnosed with cervical dystonia
People diagnosed with laryngeal dystonia
People diagnosed with a voice disorder other than laryngeal dystonia - enrollment for this group is complete
People diagnosed with craniofacial dystonia (including blepharospasm, meige syndrome, and oromandibular dystonia)
People diagnosed with limb dystonia
People diagnosed with any isolated dystonia not listed in descriptions of other cohorts
People diagnosed with myoclonus dystonia
People diagnosed with dopa-responsive dystonia
Observational
There is no primary outcome measure as this is an observational study.
Time frame: 7 years
Documents are hosted by the registry — open the source record to download them.
Plan to share: Yes — 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.
This study is completed, as verified in Oct 2020. You cannot join it, but the record below documents what was studied.
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Emory University