Sensory Symptoms in Tourette Syndrome

Study Overview
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Brief Summary
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Patients with tics will be asked to complete a series of validated questionnaires (in electronic and/or paper format) regarding symptoms and conditions often associated with Tourette syndrome, including premonitory urges, sensory experiences, inattention, obsessive-compulsive tendencies, anxiety, and depression. Participants will also be asked to complete a quality of life assessment. This series of questionnaires will be administered annually.

Detailed Description
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Patients with tics will be recruited to participate in an observational study assessing extent and variation in non-motor features of Tourette syndrome over time. Each participant will complete a battery of validated questionnaires and scales online or in paper format (per patient preference), including the Premonitory Urge to Tic Scale (PUTS), the Sensory Gating Inventory (SGI), the Sensory Perception Quotient, the ADHD Self-Report Screening Scale, and others. These questionnaires will be administered annually to patients. For the analysis, participants will be stratified by age into late adolescents (18-25 years old) and adults (older than 25 years) since adolescent development ends at approximately age 25.

Official Title
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Sensory Symptoms in Tourette Syndrome

Conditions
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Tourette Syndrome

Participation Criteria
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Eligibility Criteria
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Inclusion criteria: 18 years of age or older Ability to provide informed consent and answer self-report questionnaires independently in English Diagnosis of Tourette syndrome (TS), chronic motor tic disorder, or chronic vocal tic disorder Exclusion criteria: History of psychotic disorder History of significant neurologic disorder (e.g., stroke) other than TS or another chronic tic disorder

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Baseline Sensory Perception Quotient score, short form | Validated instrument assessing anomalous sensory experiences. Scale consists of 35 items screening patients for hyper- or hypo-sensitivity to each of the sensory domains (touch, sight, sound, smell, and taste). Each scale item is a statement to which participants provide a ranking: 0 = strongly agree = agree = disagree = strongly disagree The minimum score on the short from is 0; the maximum score is 140. Higher scores indicate more abnormal sensory experiences. | Initial assessment at enrollment (time zero) | 
| Change in Sensory Perception Quotient score, short form at 1 year | Validated instrument assessing anomalous sensory experiences. Scale consists of 35 items screening patients for hyper- or hypo-sensitivity to each of the sensory domains (touch, sight, sound, smell, and taste). Each scale item is a statement to which participants provide a ranking: 0 = strongly agree = agree = disagree = strongly disagree The minimum score on the short from is 0; the maximum score is 140. Higher scores indicate more abnormal sensory experiences. | 1 year | 
| Change in Sensory Perception Quotient score, short form at 2 years | Validated instrument assessing anomalous sensory experiences. Scale consists of 35 items screening patients for hyper- or hypo-sensitivity to each of the sensory domains (touch, sight, sound, smell, and taste). Each scale item is a statement to which participants provide a ranking: 0 = strongly agree = agree = disagree = strongly disagree The minimum score on the short from is 0; the maximum score is 140. Higher scores indicate more abnormal sensory experiences. | 2 years | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in Sensory Gating Inventory score at 2 years | Validated instrument assessing anomalous sensory experiences. The scale consists of 36 items screening patients for hyper- or hypo-sensitivity to several of the sensory domains (primarily sight and sound). Each scale item is a statement to which participants provide a ranking: = never true = infrequently true = sometimes but infrequently true = sometimes true = true = always true The minimum score on the scale is 36; the maximum score is 216. Higher scores indicate more abnormal sensory experiences. | 2 years | 
| Change in Sensory Gating Inventory score at 1 year | Validated instrument assessing anomalous sensory experiences. The scale consists of 36 items screening patients for hyper- or hypo-sensitivity to several of the sensory domains (primarily sight and sound). Each scale item is a statement to which participants provide a ranking: = never true = infrequently true = sometimes but infrequently true = sometimes true = true = always true The minimum score on the scale is 36; the maximum score is 216. Higher scores indicate more abnormal sensory experiences. | 1 year | 
| Baseline Sensory Gating Inventory score | Validated instrument assessing anomalous sensory experiences. The scale consists of 36 items screening patients for hyper- or hypo-sensitivity to several of the sensory domains (primarily sight and sound). Each scale item is a statement to which participants provide a ranking: = never true = infrequently true = sometimes but infrequently true = sometimes true = true = always true The minimum score on the scale is 36; the maximum score is 216. Higher scores indicate more abnormal sensory experiences. | Initial assessment at enrollment (time zero) | 
| Change in Premonitory Urge to Tic Scale score at 2 years | Validated instrument assessing type and extent of premonitory sensations. The scale consists of 9 scored items and 1 non-scored item, all assessing degree of abnormal sensations and urges preceding a tic. The scored scale items are ranked 1-4, with 4 being the most abnormal. The minimum score on the scale is 9; the maximum score is 36. Higher scores indicate more frequent and severe premonitory urges. | 2 years | 
| Change in Premonitory Urge to Tic Scale score at 1 year | Validated instrument assessing type and extent of premonitory sensations. The scale consists of 9 scored items and 1 non-scored item, all assessing degree of abnormal sensations and urges preceding a tic. The scored scale items are ranked 1-4, with 4 being the most abnormal. The minimum score on the scale is 9; the maximum score is 36. Higher scores indicate more frequent and severe premonitory urges. | Change from baseline score at 1 year | 
| Baseline Premonitory Urge to Tic Scale score | Validated instrument assessing type and extent of premonitory sensations. The scale consists of 9 scored items and 1 non-scored item, all assessing degree of abnormal sensations and urges preceding a tic. The scored scale items are ranked 1-4, with 4 being the most abnormal. The minimum score on the scale is 9; the maximum score is 36. Higher scores indicate more frequent and severe premonitory urges. | Initial assessment at enrollment (time zero) | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Tourette syndrome, premonitory urge, sensory dysregulation, hypersensitivity