Study Stopped
PI request due to a lack of coordinator availability for study procedures.
Dystonia Coalition Projects
Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia
1 other identifier
observational
2
0 countries
N/A
Brief Summary
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at below P25 for all trials
Started May 2015
Typical duration for all trials
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
May 1, 2015
CompletedPrimary Completion
Last participant's last visit for primary outcome
August 1, 2017
CompletedStudy Completion
Last participant's last visit for all outcomes
August 1, 2017
CompletedFirst Submitted
Initial submission to the registry
January 8, 2019
CompletedFirst Posted
Study publicly available on registry
November 7, 2019
CompletedNovember 7, 2019
November 1, 2019
2.3 years
January 8, 2019
November 6, 2019
Conditions
Keywords
Outcome Measures
Primary Outcomes (3)
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.
Interventions
This is not an interventional study.
Eligibility Criteria
People with dystonia are eligible to participate as long as they are above age 18 and fit the eligibility criteria. The coordinator at the site you contact can tell you more about this.
You may qualify if:
- Diagnosed with primary dystonia
- To be included in laryngeal dystonia group, nasolaryngoscopy (voice box exam) must have been completed to confirm diagnosis
You may not qualify if:
- Any person with secondary dystonia
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- University of Texas Southwestern Medical Centerlead
- Emory Universitycollaborator
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Design
- Study Type
- observational
- Observational Model
- CASE ONLY
- Time Perspective
- OTHER
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
January 8, 2019
First Posted
November 7, 2019
Study Start
May 1, 2015
Primary Completion
August 1, 2017
Study Completion
August 1, 2017
Last Updated
November 7, 2019
Record last verified: 2019-11