Dystonia Coalition Projects (DCP)
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.
|Official Title:||Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia|
- Observational [ Time Frame: 5 years ] [ Designated as safety issue: No ]There is no primary outcome measure as this is an observational study.
Biospecimen Retention: Samples With DNA
Whole blood, DNA, white blood cells, cell lines
|Study Start Date:||January 2011|
|Estimated Primary Completion Date:||August 2014 (Final data collection date for primary outcome measure)|
People diagnosed with cervical dystonia
People diagnosed with laryngeal dystonia
Other voice disorders
People diagnosed with a voice disorder other than laryngeal dystonia
People diagnosed with cranial dystonia
People diagnosed with oromandibular dystonia
People diagnosed with limb dystonia
All other dystonias
People diagnosed with any primary dystonia not listed in descriptions of other cohorts
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.
|Contact: Ami R Rosen, MS, CGCfirstname.lastname@example.org|
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|Principal Investigator:||H. A. Jinnah, MD, PhD||Emory University|