An observational study in Tourette Syndrome and Tic Disorder, sponsored by Vanderbilt University Medical Center. Recruiting at 1 site in United States. Open to participants aged 11 Years to 17 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2025-11-24.
Sponsored by Vanderbilt University Medical Center · Observational
Individuals with tic disorders have lower quality of life, sensory and movement difficulties, and poorer mental, social, and physical health compared to the general population. Current clinical care for individuals with tic disorders is limited: no interventions are proven to prevent or stop the disorder exist, and most treatments focus solely on tics, though other symptoms often affect quality of life more than tics. To develop new treatments and improve care for people with tics, researchers need to better understand the different symptoms people experience and how the brain causes these symptoms.
Many individuals with tic disorders have sensory and movement symptoms other than tics. A common sensory symptom is increased sensitivity to common sensations, such as glare from sunlight, tags in shirt collars, and noises from passing cars. A common movement symptom is poor handwriting and/or poor coordination. In one study of adolescents with tic disorder, difficulty with hand coordination predicted tic severity 7.5 years later, suggesting that sensory and/or motor difficulties may be a risk factor for more severe tics later in life. Despite how common they are, much is unknown about sensory and motor difficulties experienced by people with tic disorders.
Additionally, most studies of people with tics enroll younger children. As a result, little is known about sensory, motor, and psychosocial development in adolescents with tics. Knowledge of sensory and motor difficulties in adolescents with tics is important to understand because, in other adolescent populations, such difficulties are associated with worse mental and social health and worse quality of life. Deepening insight into the sensory, motor, and psychosocial development of adolescents with tic disorders is crucial to identify causes and risk factors for poor health in this population.
The goals of this study are to measure sensory and motor symptoms and function in adolescents with tics and to compare them to adolescents without tics. The research team will enroll adolescents with tics and adolescents without tics to participate in the study. Adolescent participants will complete questionnaires, electroencephalogram (EEG) tasks, and other sensory and motor tasks at baseline (with 2 study visits occurring within 30 days of each other) and 2 years later (again, with 2 study visits, occurring within 30 days of each other). A parent or other adult who knows the adolescent well will also complete questionnaires as part of the study.
The study consists of 4 visits over the course of 2 years. The first 2 visits will occur within 30 days of each other, and then, two years later, participants will be asked to attend two more study visits (again within 30 days of each other).
Study Visit 1 can occur in-person or remotely. If you and your adolescent prefer the remote visit, this will be conducted over Zoom, Microsoft Teams, or another commercial audiovisual platform. During Visit 1, adolescents will be interviewed by a trained rater to assess for tics, obsessive-compulsive disorder (OCD), and attention-deficit/hyperactivity disorder (ADHD). The interview will take about 1 hour. Adolescents will then be asked to complete a series of online questionnaires, asking about sensory experiences, coordination, puberty, mental health, and social health. The questionnaires will take about 1.5 hours to complete. In total Visit 1 will take about 2 hours and 30 minutes.
Study Visit 2 will occur in-person within 30 days of Visit 1. During Visit 2, adolescents will complete questionnaires about sensory experiences, stress, and other symptoms of tic disorders. Questionnaires will take about 1 hour to complete. Then, adolescents\' motor coordination, handwriting, and intelligence will be assessed using various tasks and scales. This will take about 2 hours and 30 minutes. Additionally, adolescents\' height, weight, and waste circumference will be measured. At the end of the visit, adolescents who are eligible will have an electroencephalogram (EEG) during which their brain activity will be measured while they experience different sensory stimuli (such as puffs of air, simple sounds) and perform different simple motor tasks (such as tapping). The EEG tasks will take about 1 hour and 30 minutes. In total, Visit 2 will take about 5 hours for adolescents eligible for EEG procedures; Visit 2 will take about 3 hours and 30 minutes for adolescents not eligible for EEG procedures. While the adolescent is being assessed, a parent or other adult caregiver will complete questionnaires about the adolescent and themselves; these questionnaires, which take a total of 2 hours to complete, ask about mental health, social health, and quality of life.
Study Visit 3 will occur 2 years after Study Visit 1. Visit 3 can occur in-person or remotely. Visit 3 procedures are identical to Visit 1 procedures.
Study Visit 4 will occur in-person within 30 days of Visit 3. Visit 4 procedures are identical to Visit 2 procedures.
240 studies on the registry are indexed under Tourette Syndrome; 40 are open to participants now.
This study's planned enrollment of 351 is above the median of 60 across 46 observational studies indexed under Tourette Syndrome.
Browse Tourette Syndrome studies →Vanderbilt University Medical Center is the lead sponsor of 833 studies on the registry; 155 are open to participants now.
Of its 125 completed or terminated interventional studies of FDA-regulated products, 92 (74%) have results posted.
Counted across the registry records on this site, refreshed daily.
Participants must be willing to attend Visits 2 and 4 in-person
Inclusion criteria for adolescents with tic disorder:
Exclusion criteria for for adolescents with tic disorder:
Additional exclusion criteria for EEG tasks for chronic tic disorder sample**
Inclusion criteria for control (neurotypical adolescent) participants
Exclusion criteria for control sample
history of tics, ADHD, OCD, or other significant neurodevelopmental or neuropsychiatric disorder.
** Note: adolescents with history of mood or anxiety disorder are eligible.
Additional exclusion criteria for EEG tasks for control sample*
Other: This study involves no intervention.
Other: This study involves no intervention.
This study involves no intervention.
Adolescent/Adult Sensory Profile (AASP)
validated, 60-item self-report questionnaire assessing sensory experiences
Time frame: from baseline to 2-year follow-up
Sensory Perception Quotient
35-item self-report questionnaire assessing self-perceived basic sensory sensitivity
Time frame: from baseline to 2-year follow-up
Sensory Gating Inventory
validated, 36-item self-report questionnaire assessing sensory over-responsivity
Time frame: from baseline to 2-year follow-up
Adolescent Motor Competence Questionnaire (AMCQ)
validated, 26-item self-report questionnaire assessing self-perceived coordination
Time frame: from baseline to 2-year follow-up
Bruininks-Oseretsky Test of Motor Proficiency, 2nd edition (BOT-2)
validated, rater-administered scale assessing motor coordination
Time frame: from baseline to 2-year follow-up
Purdue pegboard
validated, rater-administered task assessing manual dexterity and coordination
Time frame: from baseline to 2-year follow-up
Vibrotactile battery, with BrainGauge (CM4)
Device- and rater-administered battery assessing several features of vibrotactile threshold perception, including static threshold detection, dynamic threshold detection, amplitude discrimination without and with adaptation, sequential and simultaneous frequency discrimination
Time frame: from baseline to 2-year follow-up
Tactile gating indices
Participants will undergo a tactile gating paradigm, while monitored on electroencephalogram (EEG), during which puffs of air will be administered to the index finger.
Time frame: from baseline to 2-year follow-up
Contingent negative variation indices
Participants will undergo a contingent negative variation paradigm, while monitored on electroencephalogram (EEG), during which puffs of air will be administered to the index finger, cueing the participant to respond
Time frame: from baseline to 2-year follow-up
Yale Global Tic Severity Scale (YGTSS)
gold-standard semi-structured interview assessing tic severity
Time frame: from baseline to 2-year follow-up
Premonitory Urge for Tics Scale (PUTS)
validated, 10-item self-report questionnaire assessing premonitory urge severity
Time frame: from baseline to 2-year follow-up
Adult ADHD Self-Report Scale for DSM-V (ASRS-V)
6-item self-report questionnaire assessing ADHD severity
Time frame: from baseline to 2-year follow-up
Obsessive-Compulsive Inventory-Child Version-Revised (OCI-CV-R)
validated, 18-item self-report questionnaire assessing OCD symptom severity
Time frame: from baseline to 2-year follow-up
PROMIS Pediatric SF GenPop v3.0 - Anxiety 8a
8-item self-report scale assessing anxiety severity
Time frame: from baseline to 2-year follow-up
PROMIS Pediatric SF GenPop v3.0 - Depressive Sx 8a
8-item self-report questionnaire assessing depression severity
Time frame: from baseline to 2-year follow-up
PROMIS Pediatric SF GenPop v3.0 - Peer Relationships 8a
8-item self-report questionnaire assessing self-perceived peer relationship quality
Time frame: from baseline to 2-year follow-up
PROMIS Pediatric SF v1.0 - Family Relationships 8a
8-item self-report questionnaire assessing self-perceived family relationship quality
Time frame: from baseline to 2-year follow-up
PROMIS Pediatric SF v1.0 - Sleep Disturbance 8a
8-item self-report questionnaire assessing self-perceived sleep quality
Time frame: from baseline to 2-year follow-up
PROMIS Pediatric SF v1.0 - Meaning and Purpose 8a
8-item self-report questionnaire assessing meaning and purpose in life
Time frame: from baseline to 2-year follow-up
PROMIS Pediatric SF v1.0 - Life Satisfaction 8a
8-item self-report questionnaire assessing degree of satisfaction with life
Time frame: from baseline to 2-year follow-up
Lubben Social Network Scale
12-item self-report scale assessing extent of individual's social network
Time frame: from baseline to 2-year follow-up
UCLA Loneliness Scale
20-item self-report scale assessing loneliness
Time frame: from baseline to 2-year follow-up
Height, weight, waist measurement
Height, weight, waist measurement
Time frame: from baseline to 2-year follow-up
Beery Visuomotor Integration, 6th edition
validated, rater-administered measure assessing visuo-motor integration
Time frame: from baseline to 2-year follow-up
Writing kinematic indices
Using MovAlyzeR software program on a Wacom tablet, the participant will perform several writing exercises to quantify writing kinematic characteristics.
Time frame: from baseline to 2-year follow-up
Adolescent Stress and Adversity Inventory (STRAIN)
Per the scale developer's website: "The Stress and Adversity Inventory (STRAIN) is an NIMH/RDoC-recommended instrument for efficiently and reliably assessing exposure to acute and chronic life stress over the life course. The measure is entirely online and systematically inquires about a diverse array of acute life events (e.g., deaths of relatives, job losses, negative health events) and chronic difficulties (e.g., ongoing health problems, work problems, relationship problems, financial problems, etc.) that have implications for human health and well-being. Stressors occurring in early life (e.g., childhood maltreatment or neglect, parental loss/separation, etc.) are also queried. Participants are asked to rate the severity, frequency, timing, and duration of each stressor they endorse...Based on this information, the system produces 455 variables that are used to assess an individual's cumulative exposure to stress."
Time frame: from baseline to 2-year follow-up
Finger tapping indices
Participants will perform a finger tapping task, while monitored on electroencephalogram (EEG)
Time frame: from baseline to 2-year follow-up
Child Behavior Checklist
validated, 113-item, proxy-report questionnaire assessing psychopathology in children and adolescents
Time frame: from baseline to 2-year follow-up
Conners-4
validated, 117-item, proxy-report questionnaire assessing symptoms of ADHD and commonly co-occurring diagnoses of ADHD in children and adolescents
Time frame: from baseline to 2-year follow-up
Toronto Obsessive-Compulsive Scale (TOCS)
validated, 21-item proxy-report questionnaire assessing OCD symptom severity
Time frame: from baseline to 2-year follow-up
Social Communication Questionnaire - Lifetime
validated, 40-item proxy-report questionnaire assessing lifetime history of communication difficulties/differences and other symptoms suggestive of autism spectrum disorder
Time frame: from basline to 2-year follow-up
BRIEF-2 Parent Form
validated, 63-item proxy-report questionnaire assessing executive dysfunction
Time frame: from baseline to 2-year follow-up
PedsQL Family Impact Module, Version 2.0
validated, 36-item proxy-report questionnaire assessing impact of child's/adolescent's health on family
Time frame: from baseline to 2-year follow-up
PROMIS Parent Proxy SF GenPop v3.0 - Anxiety 8a
8-item, proxy-report questionnaire assessing anxiety
Time frame: from baseline to 2-year follow-up
PROMIS Parent Proxy SF GenPop v3.0 - Depressive Sx 8a
8-item, proxy-report questionnaire assessing depression
Time frame: from baseline to 2-year follow-up
PROMIS Parent Proxy SF GenPop v3.0 - Peer Relationships 7a
7-item, proxy-report questionnaire assessing proxy-perceived peer relationship quality
Time frame: from baseline to 2-year follow-up
PROMIS EC Parent-Report SF v1.0 - Social Relationships - Family Relationships 4a
4-item, proxy-report questionnaire assessing proxy-perceived family relationship quality
Time frame: from baseline to 2-year follow-up
PROMIS EC Parent-Report SF v1.0 - Sleep Health - Disturbance 4a
4-item, proxy-report questionnaire assessing proxy-perceived sleep disturbances
Time frame: from baseline to 2-year follow-up
PROMIS Parent Proxy SF v1.0 - Meaning and Purpose 8a
8-item, proxy-report questionnaire assessing proxy-perceived meaning and purpose in adolescent's life
Time frame: from baseline to 2-year follow-up
PROMIS Parent Proxy SF v1.0 - Life Satisfaction 8a
8-item, proxy-report questionnaire assessing adolescent's satisfaction with life
Time frame: from baseline to 2-year follow-up
Short Sensory Profile - 2
validated, 34-item proxy-report questionnaire assessing sensory experiences
Time frame: from baseline to 2-year follow-up
Developmental Coordination Disorder Questionnaire
15-item proxy-report questionnaire assessing motor coordination
Time frame: from baseline to 2-year follow-up
Edinburgh Handedness Inventory - Short Version
4-item self-report questionnaire to assess extent of individual's left- or right-handed dominance
Time frame: from baseline to 2-year follow-up
Pubertal Development Scale
5-item self-report scale assessing pubertal stage, based on self-reported signs
Time frame: from baseline to 2-year follow-up
Weschler Abbreviated Scale of Intelligence, 2nd edition (WASI-II), 2-subtest with Vocabulary and Matrix Reasoning
validated, rater-administered measure assessing intelligence
Time frame: baseline
UCLA Loneliness Scale (Adult Proxy)
20-item self-report questionnaire assessing loneliness
Time frame: from baseline to 2-year follow-up
PROMIS SF v1.0 - Anxiety 8a (Adult Proxy)
8-item, self-report questionnaire assessing adult proxy's anxiety
Time frame: from baseline to 2-year follow-up
PROMIS SF v1.0 - Depression 8a (Adult Proxy)
8-item, self-report questionnaire assessing adult proxy's depression
Time frame: from baseline to 2-year follow-up
Perceived Stress Scale (Adult Proxy)
10-item self-report questionnaire assessing adult proxy's self-perceived stress
Time frame: from baseline to 2-year follow-up
Interpersonal Support Evaluation List (Adult Proxy)
12-item self-report questionnaire assessing adult proxy's self-perceived social support
Time frame: from baseline to 2-year follow-up
Plan to share: Undecided — As per NIH guidelines, de-identified data will be shared in an established repository (https://sharing.nih.gov/data-management-and-sharing-policy/sharing-scientific-data/repositories-for-sharing-scientific-data) no later than 12 months after the end of any proposed funding period or within 12 months of the last study visit, whichever comes first. The data sharing plan is not yet available in an online format.
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