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Participant Research Information

For all studies listed below, please have your physicians and/or medical professions explore the medical professionals link to gain full details about the study and qualifications related to who is appropriate. Most medication studies have many specific inclusion and exclusion criteria that determine if you or your family member are appropriate for that trial, so following up with your medical profession or the contact information below is important.

Screening, Genes and QuestionnairesResearch brain

Gene Collection

  • A Multi-center gene collection sample and questionnaire
  • Southeast Center of Excellence Participating: All Centers within Region, headed by University of Florida and the TSAICG
    • The aim of this study is to find a gene that causes Tourette Syndrome
    • Tourette Syndrome Association International Consortium for Genetics (TSAICG) is a group of clinicians and scientists who have been working together, trying to find genes that cause Tourette Syndrome (TS). In the last few years, we have identified some chromosomes that may hold TS genes. Now, we want to follow up those findings and identify the genes that cause TS. In order to do this, we need to collect information about tics and other symptoms and DNA from thousands of people with TS. Finding the genes that cause TS is a key step to improving diagnosis and treatment for people with TS
    • Special Considerations: If appropriate and chosen for study, then you will be provided with materials needed to complete at home
  • Contact information for Study: www.findtsgene.org
    • East Coast: Cornelia Illmann, PhD (1-877-883-9350)
    • West Coast: Jenny Zhong, B.A. (1-877-992-9950)

Screening Tool for Tics

  • Screen of Behavior and Movements in a Clinic Population:
  • Southeast Center of Excellence Participating: University of South Florida, Rothman Center
    • The aim of this study is to develop a screening measure for tics in children and adolescents.
    • Special Considerations: None
  • Contact Information for Study:Alexis Wolfe (727-767-7238)

Genetics and Epidemiology Study

Medication Trials

Ecopipam

  • A multicenter, double-blind, placebo-controlled, randomized, cross-over study to assess the efficacy and safety of ecopipam in children ages 7-17 with TS (PSY 302):
  • Southeast Center of Excellence Participating: University of South Florida, Rothman Center
    • To evaluate an experimental drug called ecopipam in children ages 7-17 with Tourette’s syndrome. Participants are in the trial for 3-4 months with visits every 2 weeks to monitor safety and efficacy.
    • Special Considerations:
      • Must be aged 7-17 with a diagnosis of Tourette Syndrome
      • Must be monitored with visits every 2 weeks for safety and efficacy over a 3-4 month period
      •  For Inclusion/Exclusion Criteria, please see Medical Professionals Page
  • Contact Information for Study: Alexis Wolfe (727-767-7238)

T-Force

  • A Phase 1b, Open-Label, Multiple-Dose Study to Evaluate the Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of NBI-98854 in Children and Adolescents with Tourette Syndrome:
  • Southeast Center of Excellence Participating: University of South Florida, Rothman Center
    • The aim of the T-Force study is to determine the safety and pharmacokinetics of an investigational medication NBI-98854 (Valbenazine) in children and adolescents.
    • Special Considerations:
      • Must be aged 6-18 years old, diagnosed with Tourette Syndrome
      •  Current medication regime is expected to remain stable during study trial (period of 30 days)
      • Participants are asked to provide blood work throughout the study
      • For Inclusion/Exclusion Criteria, please see Medical Professionals Page
  • Contact Information for Study: Alexis Wolfe (727-767-7238)

 

T-Force

  • A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome:
  • Southeast Center of Excellence Participating: University of South Florida, Rothman Center
    • The aim of the T-Force Green study is to evaluate the efficacy of two active doses of Valbenazine administered once daily in pediatric subjects, to assess the safety and tolerability of repeated daily doses, and to evaluate plasma exposure of Valbenazine and its metabolite following repeated daily doses. The duration of the study is 11 weeks total with 6 weeks of active medication or placebo.
      • Special Considerations:
        • Be male or female, aged 6 to 17 years, diagnosed with Tourette Syndrome.
        • Special Considerations:
          • Must be aged 6-18 years old, diagnosed with Tourette Syndrome
          •  Current medication regime is expected to remain stable during study trial (period of 30 days)
          • Participants are asked to provide blood work throughout the study
          • For Inclusion/Exclusion Criteria, please see Medical Professionals Page
      • Contact Information for Study: Alexis Wolfe (727-767-7238)

T-Forward

  • A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome (T-Forward):
  • Southeast Center of Excellence Participating: University of South Florida, Rothman Center and The University of Florida
    • The aim is to evaluate the safety, tolerability, pharmacokinetics, and efficacy of 2 active doses of NBI-98854 within adults aged 18 – 64 years.
    • Special Considerations:
      • Must be 18-64 years of age with diagnosis of Tourette Syndrome
      • Current medication regime is expected to remain stable during study trial (period of at least 30 days before trial and up to 10 weeks during the trial)
      • For Inclusion/Exclusion Criteria, please see Medical Professionals Page
    • Contact Information for Study: Alexis Wolfe (727-767-7238) at Rothman Center
    • Contact Information for Study: Heather Simpson, MOT, OTR/L (352-294-5385; simph@shands.ufl.edu) at University of Florida

Other Studies

Handwriting and Tourette Syndrome

  • A multicenter graphomotor assessment completed by rehab professionals to assess handwriting quality and efficiency in children and adolescents with TS.
  • Southeast Center of Excellence Participating: University of Alabama-Birmingham/Children’s of Alabama and University of Florida