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NCT05696769 | Recruiting | Tourette Syndrome

Tourette Discrimination (TD) Stigma Scale
Sponsor:

Wake Forest University Health Sciences

Brief Summary:

The goal of this qualitative study is to understand the challenges of stigmatization and discrimination in children and young adults with Chronic Tic Disorders (CTD), including Tourette Syndrome. Measuring and understanding how stigma affects those with CTD will help inform future work.

Condition or disease

Tourette Syndrome

Tourette Syndrome in Children

Tourette Syndrome in Adolescence

Tic Disorder, Childhood

Tics

Detailed Description:

This study will utilize a phased approach, where (1) Narrative and thematic content data will be obtained through in-depth qualitative interviews of CTD stakeholders. (2) Based on these results, a novel scale will be developed through the Delphi Method with CTD stakeholders. (3) Preliminary analyses of the scale's psychometric properties.}}

Study Type : Observational
Estimated Enrollment : 135 participants
Official Title : Measuring Stigmatization in Chronic Tic Disorders: Development and Validation of the Tourette Discrimination-Stigmatization (TD-STIGMA) Scale
Actual Study Start Date : March 4, 2023
Estimated Primary Completion Date : September 2024
Estimated Study Completion Date : March 2025

Information not available for Arms and Intervention/treatment

Ages Eligible for Study: 8 Years
Sexes Eligible for Study: All
Accepts Healthy Volunteers: No
Criteria
Inclusion Criteria
  • CTD Cohort
  • Physician-confirmed diagnosis of CTD based on the Diagnostic and Statistical Manual for Mental Disorders-Fifth Edition (DSM-V) criteria
  • 8-30 years old.
  • Parent/caregivers, supporters, medical providers, advocate cohort (s)
  • Involved in the care of a child, youth or young adult with CTD
  • The known person with CTD has had tics for more than a year at the time of screening
Exclusion Criteria
  • CTD Cohort
  • Exclusion criteria
    • Non-English speaking
    • Diagnosis of intellectual disability
    • Diagnosis of psychosis
    • 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
Tourette Discrimination (TD) Stigma Scale

Location Details

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Tourette Discrimination (TD) Stigma Scale

How to Participate

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Locations

Recruiting

United States, North Carolina

Wake Forest University Health Sciences

Winston-Salem, North Carolina, United States, 27157