The TAA supports clinical research and clinical studies to improve the quality of life for those affected by Tourette Syndrome. The studies below are listed for informational purposes only. Visit  www.clinicaltrials.gov for a more comprehensive list of opportunities to participate in research studies in your area. To list an IRB-approved study on this page, contact Diana Shineman in the national Tourette Association office Diana.Shineman@tourette.org

Tourette Association Funded Clinical Studies

Circadian Rhythms and Light Therapy in Adults with Tourette Syndrome Disorder

Seeking Youth with Tourette Syndrome for Circadian Rhythms, Sleep and Light Therapy Research

Online Tic Treatment Study for Adults

Online Tic Treatment Study

PI: Hannah Reese, Ph.D.

Bowdoin College

 

WHO: Adults with Tourette Syndrome or Persistent (Chronic) Tic Disorder

WHAT: A randomized controlled trial comparing an online mindfulness-based intervention to online psychoeducational and supportive therapy intervention. Both interventions are 8 weeks long and consist of weekly 90-minute group videoconferences and questionnaires.

Eligible participants will be randomly assigned to one of the two 8-week online interventions.

Assessments will also be conducted before and after the intervention.

WHERE: Online with researchers from Bowdoin College and Massachusetts General Hospital

COMPENSATION: $200

CONTACT: Jin Shin: (617) 724-4354, jshin15@mgh.harvard.edu

For more information: https://research.bowdoin.edu/tic-treatment-study

Hannah E. Reese, Ph.D.,

Principal Investigator

Bowdoin College

(207) 798-4146

hreese@bowdoin.edu

Proof of Concept Study on the Effect of an Oral Orthotic on Tic Severity New York, NY

The Weill Cornell Medical College Department of Child and Adolescent Psychiatry is conducting a study that will test a piece of dental equipment in children and young adults with chronic tic disorders and Tourette syndrome.

Eligibility: Children and young adults ages 7-25 who make sounds or movements that they cannot control like eye blinking, facial grimaces, arm or leg twitches, throat clearing, sniffling, or other noises. If you or your child meet this criteria, you may be eligible to participate in the research study.

Study Design:

  • The study involves:
  • 5 visits
  • Medical and psychological evaluations
  • Fitting for a therapeutic dental appliance

Information/Contact: For more information please call the Weill Cornell Medical College, Department of Child and Adolescent Psychiatry at 212-746-5930

6/26/14

Neuroimaging - Tourette Association Neuroimaging Pilot Study Baltimore, MD; New York, NY; St. Louis, MO & Los Angeles, CA

In 2012, the Tourette Association re-launched its neuroimaging consortium with a grant award of $500,000. The PI’s of the new group are Bradley Schlaggar, M.D., Ph.D. and Kevin Black, M.D., both at the Washington University School of Medicine, St Louis, MO. The initial aims of the consortium are to develop a multisite working partnership; generate and reconcile pilot data from small scale fMRI studies conducted at different sites; and craft a grant application to obtain more substantial funding from the NIH to determine the neural changes that underlie TS.

If you would like to learn more about participating in this study, please contact the Study Coordinator closest to you.

If you would like to learn more about participating in this study, please contact the Study Coordinator closest to you.

Location: Kennedy Krieger Institute /John Hopkins University, Baltimore, MD

Principal Investigator: Stewart Mostofsky, M.D. & Harvey Singer, M.D.

Study Coordinator: Carrie Nettles: Nettles@kennedykrieger.org
(443) 923-9263

Location: New York University, NY

Principal Investigator: Adriana Di Marino, M.D.

Study Coordinator: Jessica Sunshine: sunshj01@nyumc.org

(212) 263-4723

Location: Washington Univeristy School of Medicine, St. Louis, MO

Principal Investigator: Bradley Schlaggar, M.D., Ph. D & Keving Black, M.D.

Study Coordinator: Amber Spies: spiesa@npg.wustl.edu

317-362-5041

Location: University of California, Los Angeles, CA

Principal Investigator: John Piacentini, Ph.D. & James McCracken, M.D.

Study Coordinator: Olivia Johnson: Ojohnson@mednet.ucla.edu

(310) 825-2064

Take Part In Brain Research! Attention: Parents Of Children Ages 8 To 12 Baltimore, MD

We are recruiting children to participate in an MRI research study to learn if there are differences between the brain’s structure and its function in children with and without Tourette Syndrome (TS).

WHO: Children with TS and typically
developing children.

WHAT: Two days consisting of computer games, paper &
pencil tasks, Transcranial Magnetic Stimulation
(TMS), and a Magnetic Resonance Imaging (MRI)
scan of the brain. IQ testing and report and a
picture of your child’s brain!

WHERE: Kennedy Krieger Institute

BENEFIT: There are no significant risks or direct medical
benefits for participating in this study.

COMPENSATION: $50.00 per day of study participation.

You can contact Jon Phillips at 443-923-9254 or PhillipsJo@kennedykrieger.org.

Genetics - Tourette Association International Genetics Consortium Research Centers throughout the USA

There is compelling evidence to suggest that the inheritance of certain genes causes or contributes to the development of TS. The Tourette Syndrome Association’s International Consortium for Genetics (Tourette AssociationICG) has identified several chromosomes that may contain genes that predispose individuals to TS. In 2010, the Tourette AssociationICG received a grant of $1.8 million as part of the federal stimulus plan – the American Recovery and Reinvestment Act (ARRA) of 2009.  The ARRA funding will be used to confirm previous gene findings by collecting DNA from an additional 3,000 individuals with TS.
Anybody older than 6 years of age with a confirmed diagnosis of TS can participate in the study. Involvement in the study includes completing a questionnaire about tics and related problems and giving a blood sample for genetic analysis. Some people will also be asked to complete an optional interview. Interested participants can learn more about the study by visiting www.findtsgenes.org or calling 1-877-883-9950.

Non-Tourette Association Funded Studies

The studies below are listed for informational purposes only. Visit  www.clinicaltrials.gov for a more comprehensive list of opportunities to participate in research studies in your area.

To list an IRB-approved study on this page, contact Diana Shineman in the national Tourette Association office diana.shineman@tourette.org

ARTISTS Tourette Syndrome Research Study

ARTISTS 1 is conducting a Tourette Syndrome research study. In this double-blind study, doctors want to evaluate the efficacy, safety, and tolerability of TEV-50717 in children and adolescents with Tourette syndrome. TEV-50717 is a new formulation of tetrabenazine that has shown the ability to reduce dosing frequency, which could improve overall tolerability as compared to that of tetrabenazine.

Eligible patients will be randomized in a 1:1 ratio to receive either TEV-50717 or placebo. The overall treatment period will last 10 weeks, which is made up of a titration period of 2 weeks, a maintenance period of 4 weeks, and a washout period of 1 week. Total study participation will last up to 18 weeks, which includes approximately 8 visits to the study clinic.

To pre-qualify for the ARTISTS 1 study, patients must:
• Be 6 to 16 years of age, inclusive
• Weigh at least 44 pounds (20 kg) at baseline
• Meet the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) diagnostic criteria for Tourette syndrome

All study-related visits, tests, and drugs will be provided at no cost. In addition, patients may be reimbursed for study-related travel.

For more information, please visit www.artiststudyts.com

Click here for a complete listing of contacts and sites

Biofeedback as a new treatment for Chronic Tic Disorder or Tourette Syndrome, New Haven, CT

Does your child have Chronic Tics or TS?

The Yale Magnetic Resonance Research Center is seeking research participants age 11-19 to evaluate biofeedback as a new treatment for Chronic Tic Disorder or Tourette Syndrome.

Total of 7 MRI scans, Compensation up to $600

Interested participants and family members should contact Christopher Walsh, Yale Magnetic Resonance Research Center
phone: (203)737-6055 email: christopher.walsh@yale.edu
Travel reimbursement available when one-way distance is 30 miles or greater
HIC #0206017435

CBIT Study For Children Ages 11-17 with Tics & ADHD, Massachusetts

Is your child suffering from tics and ADHD? If you have a child aged 11-17 who is bothered by tics and ADHD symptoms, we may be able to help. The Massachusetts General Hospital is conducting a no-cost clinical trial with children (ages 11 to 17 years) who are both bothered by their tics and are suffering from ADHD. Children who are eligible for the study will receive a diagnostic evaluation and either a standard or modified course of comprehensive behavioral intervention for tics at no cost. For more information, please contact Erica Greenberg, MD at 617-643-934 andegreenberg@partners.org, or Eliza Davidson, BS: 617-643-4357 and ejdavidson@mgh.harvard.edu for more information.

Family Accommodation in Children with Chronic Tic Disorders

Researchers at Kent State University are seeking parents of children/ adolescents ages 7-17 to complete a survey designed to help us better understand how parents of children with chronic tic disorders interact with their children. This posting has been approved by the Institutional Review Board of Kent State University.

If you have a child between the ages of 7 and 17 years and live with them 50% of the time or more, please select the following link to participate in this study.

Research Study Examining Brain-Behavior interactions in Teens with Tics Providence, Rhode Island

Speech and Ticking in Tourette's Study, University of Southern California

We are looking for adults living with Tourette to participate in a research study comparing the sounds of speech and vocal tics.

WHO: Anyone over 18 who has been diagnosed with Tourette’s syndrome is invited to participate.

WHAT: You will be recorded performing different speech tasks like describing a picture, reading some sentences and telling a story about yourself. You will be asked to tic freely during recordings. There will be two recording sessions, 3 hours the first day and 2 hours the second.

WHERE: A location of your choosing where you feel comfortable. Recording can take place anywhere as the researcher will travel to you. If you prefer, the researcher can make necessary location arrangements for you.

BENEFIT/RISK: There are no direct medical benefits or risks that you expose yourself to by participating.

COMPENSATION: $20/hour

CONTACT: Mairym Llorens | (787) 233-1791 | llorensm@usc.edu

Study Approval Letter

The New Tics Study: A Novel Approach to Pathophysiology and Cause of Tic Disorders - St. Louis, MO

The University of Utah – Utah Tic Lab Survey on You Experiences Navigating the Health System

University-of-Utah-Survey-Flier Tourette Association of America

NYU Langone Health – Research Study on Opinions Related to Deep Brain Stimulation

Tourettes-flyer-NYU Langone Health

Tourettes-flyer-NYU Langone Health

Sleep-Wake Rhythms Surveys in Children and Adults with Tourette's Disorder

Researchers at UCLA are recruiting children and adults with Tourette’s Disorder or other chronic tic disorders to participate in a survey assessing sleep-wake rhythms. We have separate surveys for adults, and children/parents.

Parent and Child Survey (Ages 10 to 17): The parent and child survey will take approximately 45 minutes to complete and will require both your and your child’s participation. It will include questions about your child’s demographics, medical/psychiatric history, tic severity and course, sleep-wake rhythms, general sleep habits, emotional functioning, and behavioral patterns. Upon completion of the survey, you will be able to enter into a drawing to receive a $50 Visa gift card. However, survey completion is not required to participate in this drawing.

Parent and Child Survey Linkhttps://www.ctrc.medsch.ucla.edu/redcap/surveys/?s=LP3RD7AWEE

 

Adult Survey (18 years and older): The adult survey will take approximately 30 minutes to complete. It will include questions about your demographics, sleep-wake rhythms, general sleep habits, tic severity and course, tic-related impairment, emotional functioning, and behavioral patterns. Upon completion of the survey, you will be able to enter into a drawing to receive a $50 Visa gift card. However, survey completion is not required to participate in this drawing.

Adult Survey Linkhttps://www.ctrc.medsch.ucla.edu/redcap/surveys/?s=NARMNLK8K8

TIC Genetics: Tourette International Collaborative Genetics Study - Yale School of Medicine

About the study:
Your family has been invited to be part of a study of families in which a child has Tourette Syndrome
and/or related disorders such as chronic vocal or motor tics and his/her parents do not. Although it is
well known that genetic factors play a role in causing tics, the responsible genes have not yet been
discovered. Recent dramatic advances in genetic techniques hold out the promise that we may soon be
able to identify such risk-conferring genes. The purpose of this study is to identify the genetic factors
that cause Tourette Syndrome and tics using a family-based approach. This will greatly contribute to our
understanding of Tourette Syndrome and may help develop new therapies in the future. This study
requires participation from a child and both biological parents, can be done in-person or remotely, and
participation will be compensated with a $100 Amazon gift card.

Click to learn more about the study.