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


Phoenix/Scottsdale, Ariz.

Trial status:

Open for Enrollment

Why is this study being done?

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. Subjects with laryngeal dystonia and voice disorders will also be asked to have a transnasal laryngoscopy (an exam of the voice box) where the subject has a flexible tube passed through their nose and into the throat to view the throat and voice box. A study visit will take between 45 minutes and 4 hours depending upon which portions of the study a subject completes. A subset of subjects will be asked to return annually for a one hour visit.

Who is eligible to participate?

Inclusion Criteria: - Diagnosed with primary dystonia OR - Diagnosed with voice disorders like muscle tension dysphonia, psychogenic dysphonia, and vocal fold paresis or paralysis - To be included in laryngeal dystonia or voice disorder groups, nasolaryngoscopy (voice box exam) must have been completed to confirm diagnosis Exclusion Criteria: - Any evidence of a secondary cause for dystonia - Less than 2 months since last botulinum toxin injection Criteria that will keep people from participating in some research activities: - Any surgical treatment for dystonia - Significant medical or neurological conditions that preclude completing the neurological exam - For those with voice disorders and laryngeal dystonia, significant medical or neurological conditions that preclude completing a nasolaryngoscopy - Significant physical or other condition that would confound diagnosis or evaluation, other than dystonia or tremor - Being on varying doses of certain medications within the past one month

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