The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias (DCP)
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|ClinicalTrials.gov Identifier: NCT01373424|
Recruitment Status : Recruiting
First Posted : June 15, 2011
Last Update Posted : June 16, 2020
|Condition or disease|
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.
|Study Type :||Observational|
|Estimated Enrollment :||3165 participants|
|Official Title:||Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia|
|Study Start Date :||January 2011|
|Estimated Primary Completion Date :||July 31, 2020|
|Estimated Study Completion Date :||July 31, 2020|
People diagnosed with cervical dystonia
People diagnosed with laryngeal dystonia
Other voice disorders
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
All other isolated dystonias
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 [ Time Frame: 7 years ]There is no primary outcome measure as this is an observational study.
Biospecimen Retention: Samples With DNA
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01373424
|Contact: Adam Kassemfirstname.lastname@example.org|
|Principal Investigator:||H. A. Jinnah, MD, PhD||Emory University|