Dystonia Coalition Projects

Study Overview
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Brief Summary
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Dystonia is a disorder characterized by excessive involuntary contraction of muscles with repetitive and patterned movements. The primary focal 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 primary focal dystonias and to develop and validate various dystonia rating scales.

Detailed Description
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This collaborative, international effort has two primary goals. The first is to create a biospecimen repository and associated clinical database to be used as a resource for dystonia and related disease research. The second goal is to create and validate various rating scales for focal dystonias to be used during a typical clinical examination. 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 videotaped, complete some questionnaires, and donate a blood sample. A study visit will take between 45 minutes and 1 hour depending upon which portions of the study a subject completes. A subset of subjects will be asked to return no more often than once a year for a one hour follow-up visit.

Official Title
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Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia

Conditions
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Dystonia

Intervention / Treatment
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* Other: Dystonia Coalition is an observational study.


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Diagnosed with primary dystonia To be included in laryngeal dystonia group, nasolaryngoscopy (voice box exam) must have been completed to confirm diagnosis Exclusion Criteria: -Any person with secondary dystonia

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 99 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Intervention/Treatment |
| --- |
|Other: Dystonia Coalition is an observational study.|This is not an interventional study.|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| To collect clinical data for future studies that will help to understand the varied clinical manifestations, natural history, and pathogenesis of the dystonias. | data collected will be demographic and medical information | Through study completion, an average of two years. | 
| To create a biospeciman repository as a resource for future research in dystonia and related diseases |  | Through study completion, an average of two years. | 
| To develop and validate rating scales that can be used to diagnose different forms of dystonia and monitor their severity over time | a six phase process will be employed to develop and evaluate a scale that is specifically designed to assess psychiatric co-morbidities in cervical dysplasia (CD) | Through study completion, an average of two years. | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Cervical dystonia, Cranial dystonia, Limb dystonia