Dystonia Clinical Trial
Official title:
Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia
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.
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.
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