Volunteers Needed for Ongoing Tourette Research

General Information About Participating in Medical Research:

If someone in your family with Tourette is interested in participating in a clinical trial of new treatments or therapies, please visit the website www.clinicaltrials.gov and type in the keyword “Tourette.”

 

This government website provides regularly updated information about federally and privately supported clinical research in human volunteers. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. The information provided on ClinicalTrials.gov should be used in conjunction with advice from health care professionals.

 

Clinical trials are an essential tool for improving the treatment of Tourette and other medical conditions. Why participate in a clinical trial? As ClinicalTrials.gov puts it: “Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research."

Sleep-Wake Rhythms Internet Survey in Children with Tourette Syndrome

The UCLA Child OCD, Anxiety, and Tic Disorders Program recently held a webinar, hosted by the Southern California Chapter of the Tourette Association of America on “Managing Tourette Syndrome and Anxiety during Covid-19."  We discussed the impact that COVID-19 has had on children and families, and provided guidance on managing Tourette Syndrome and anxiety in the context of COVID-19 and the new school year. We wanted to share the recording in case it may be of help. It can be viewed at the following link: https://www.youtube.com/watch?t=195s&v=0ahWy9tYMLA

 

Our program is also conducting an internet survey on sleep in youth with Tourette Syndrome. As there is still minimal information known about sleep in Tourette Syndrome relative to other conditions, we are excited about the knowledge to be gained. Would it be possible for you to share the survey link and information with your group members? I’ve included the information below in case you are able to share it. We would greatly appreciate your help.

Sleep-Wake Rhythms Internet Survey in Children with Tourette Syndrome

Researchers at UCLA are recruiting children with Tourette Syndrome ages 10 to 17 and their parents to participate in an internet survey evaluating sleep-wake rhythms. It will include questions about your child’s demographics, medical/psychiatric history, tic severity, sleep-wake rhythms, general sleep habits, emotional functioning, and behavioral patterns. Parent questions are presented first, followed by child questions within the same survey, so it is recommended that you and your child are near as you complete it. Upon completion of the survey, you will be able to enter a drawing to receive 1 of 20 $50 Visa gift cards.

https://www.ctrc.medsch.ucla.edu/redcap/surveys/?s=LP3RD7AWEE

 

Tourette International Collaborative Genetics Study

NJCTS founder Faith Rice saw a newspaper article that Dr. Jay Tischfield, a professor at Rutgers University, was awarded more than $20 million in federal funding to build and run the world’s largest university-based biorepository for mental health disorders. Tourette Syndrome was not on the list of disorders to be included in the biorepository. Knowing about the lack of progress in TS research, Faith reached out to Dr. Tischfield. Within a month of that call Dr. Tischfield agreed to add TS to the list enough families could be recruited to provide genetics samples to show there was support for such research and in turn raise the money to add TS to the repository’s portfolio.

All of this was made possible because individuals and families answered the call! More research needs to be done to find answers, treatments and eventually a cure for TS. You and your family are critical to making that happen. Without participation from individuals and families, no research can be done.

Email familystudy@biology.rutgers.edu to become part of this breakthrough research. Or for more information, please call NJCTS at 908-575-7350.  

 

ArtisTS Research Study

This up to 18-week study has been approved by the US Food and Drug Administration to evaluate the efficacy and safety of investigational medication for the reduction of motor and phonic tics associated with Tourette syndrome in children and adolescents 6 through 16 years of age. Studies have suggested that up to 7% of school children fulfill the diagnostic criteria for Tourette syndrome.

To qualify for this research study your child must:

  • Be between 6 and 16 years of age

  • Exhibit tics or have been diagnosed with tics and / or Tourette syndrome

  • Have a caregiver willing to comply with all study-related procedures

  • Not have a diagnosis of bipolar disorder or psychosis, including schizophrenia

 
Research Studies in the NYC area:

 

Columbia University Accepting Volunteers Aged 17-70

Columbia University is conducting an outpatient research study of a non-medicational investigational treatment for Tourette's. Participants will receive treatment with a non-invasive magnetic device (Transcranial Magnetic Stimulation or TMS approved by the FDA for the treatment of Depression), diagnostic testing, a physical exam, and lab tests. Participation is free and confidential.

 

For more information, please call 212-543-5767 or email bbclinic@columbia.edu.

 

Gene Repository

The New Jersey Center for Tourette Syndrome and Associated Disorders is creating the world's first sharing repository for human cells and DNA for Tourette Syndrome research. The ultimate goal of this study is to identify genetic (inherited) factors that play a role in causing TS and related disorders such as OCD, ADHD, and Chronic Tics. Dr. Robert King, Director of the Yale University Child Study Center TS and OCD Clinic, meets with every family to conduct screenings on-site at Rutgers University in New Jersey.

 

If you and your family agree to participate in this study, you will be asked to complete a survey questionnaire and come to Rutgers University in Piscataway to review your survey answers, answer questions about your family tree, and give a sample of blood or saliva.

 

Families may participate if a member has TS and the participating family members are English-speaking.

 

For more information, please call 908-575-7350.

For additional current research opportunities, click here:  https://www.tourette.org/research-medical/current-research-programs/

© 2017 by TAA-NYC

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