What do people living with Tourette think should be studied?
Community Summary of: Treating Tourette Together: An Agenda for Patient-Centered Research Focused on Comprehensive Behavioral Intervention
Authors of the article in the Journal of Behavior Therapy: Christine Conelea PhD, Shannon Bennett, Michael B Himle, Sara Hamilton, Carolyn Hunt, Diana Shineman, Carol Mathews, Matthew R Capriotti
Published online: March 2024
Community summary posted on April 1, 2025
Word count: 469 (4 min)
Reading level: 8th grade
Read the full article (subscription required):
Why does this study matter?
Comprehensive Behavioral Intervention for Tics (CBIT) is recommended by doctors and tic experts because it helps many people and does not involve medication. But it isn’t available to everyone who needs it. We don’t know enough about how it works and for which patients. Also, we don’t know enough about what people living with tics want researchers to study. For example, do patients prefer in-person, self-help, or telehealth CBIT? How can we provide more cost efficient and personalized CBIT?
A group of tic researchers wanted to talk with people living with tics, parents, and advocates and prioritize research questions together. The group wanted to create an agenda of these questions, look for funding, and then study them. They hoped to make CBIT more available for more people.
What happened?
The group of researchers and the Tourette Association of America (TAA) invited about 40 people from around the US to a 2-day meeting at the University of Minnesota. The group discussed their experiences and the issues they care about. They created research questions and created a research agenda. These questions are summarized in a 4-page report.
After the meeting, attendees completed a survey. They reported being satisfied with their overall experience and that their “perspective was heard and appreciated” (90% “strongly agree,” 10% “agree”). Attendees said that including more adults with a broader range of tic severity, more cultural and ethnoracial diversity, and more educational and health care professionals would have made the meeting better.
What did this group learn?
There were four research areas prioritized: (a) how to expand access to CBIT? (b) how to improve treatment outcomes? (c) what other treatment options are there? and (d) how to focus on outcomes that matter to patients (beyond tic severity)?
Attendees wanted to know whether CBIT impacts things like self-esteem, self-confidence, perceived control of tics, hours spent in class or work, and readiness for independent adult life. They wondered if combining CBIT with other things might improve outcomes for additional problems, such as ADHD, OCD, anxiety disorders, and sensory dysregulation.
We learned that this 2-day meeting was possible to do (attendees actively engaged in the process), acceptable (attendee satisfaction was high), and productive (the group created good research questions to follow up on).
What can our research team do next?
The researchers and the TAA have initiated several specific projects addressing attendee’s concerns. For example, our lab’s studies focus on how CBIT providers practice and another on turning patients’ CBIT goals into treatment outcomes. Our lab is working on personalizing CBIT for patients. We are also working on expanding CBIT using transcranial magnetic stimulation (CBIT+TMS). Additionally, our studies focus on making CBIT more accessible and helping the whole person. We also started an online Registry to make participating in research easier and more accessible. In the future, our lab hopes to continue researching the questions the attendees created and to give some answers back. We’ve maintained many of the relationships that were started or strengthened at Treating Tourette Together.
How can you find out more?
Check out the Treating Tourette Together website
