Understanding stigma in children and young adults with Tourette Syndrome
Measuring Stigmatization in Chronic Tic Disorders: Development and Validation of the Tourette Discrimination-Stigmatization (TD-STIGMA) Scale
This study looks at the challenges of stigma and discrimination that kids and young adults with Tourette Syndrome face to help create a new tool for understanding these issues better.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 135 (estimated) |
| Ages | 8 Years and up |
| Sex | All |
| Sponsor | Wake Forest University Health Sciences Academic / other |
| Locations | 1 site (Winston-Salem, North Carolina) |
| Trial ID | NCT05696769 on ClinicalTrials.gov |
What this trial studies
This observational study aims to explore the challenges of stigmatization and discrimination faced by children and young adults with Chronic Tic Disorders, including Tourette Syndrome. It will involve in-depth qualitative interviews with stakeholders to gather narrative and thematic content data. Based on these insights, a novel stigma scale will be developed using the Delphi Method, followed by preliminary analyses of the scale's psychometric properties to ensure its effectiveness.
Who should consider this trial
Good fit: Ideal candidates include children and young adults aged 8-30 with a physician-confirmed diagnosis of Chronic Tic Disorders.
Not a fit: Patients who are non-English speaking or have a diagnosis of intellectual disability or psychosis may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved understanding and measurement of stigma, ultimately informing better support and interventions for individuals with Tourette Syndrome.
How similar studies have performed: While stigma related to chronic conditions has been studied, this specific approach to measuring stigma in Chronic Tic Disorders is novel and has not been extensively tested.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: CTD Cohort 1. Physician-confirmed diagnosis of CTD based on the Diagnostic and Statistical Manual for Mental Disorders-Fifth Edition (DSM-V) criteria 2. 8-30 years old. Parent/caregivers, supporters, medical providers, advocate cohort (s) 1. Involved in the care of a child, youth or young adult with CTD 2. The known person with CTD has had tics for more than a year at the time of screening Exclusion Criteria: CTD Cohort Exclusion criteria: 1. Non-English speaking 2. Diagnosis of intellectual disability 3. Diagnosis of psychosis 4. Any other condition that, in the Principle Investigator's opinion, would limit the participant's (or parent's) ability to understand study measures. Parent/caregivers, supporters, medical providers, advocate cohort (s) 1) The known person with CTD has an intellectual disability or diagnosis of psychosis
Where this trial is running
Winston-Salem, North Carolina
- Wake Forest University Health Sciences — Winston-Salem, North Carolina, United States (Recruiting)
Study contacts
- Principal investigator: Jaclyn M Martindale, DO — Wake Forest University Health Sciences
- Study coordinator: Jaclyn M Martindale, DO
- Email: jmartind@wakehealth.edu
- Phone: 336-716-4104
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.