Tic Disorders and Tourette Syndrome Program | Research and Innovations

Characterizing the microbiome in children with tics and obsessive-compulsive disorder

We are conducting a research study to advance our understanding of the gut-brain connection in children with obsessive-compulsive disorders and tic disorders. In this study, participants will be asked to provide a stool sample. A parent/guardian will also complete questionnaires online via a HIPAA-compliant platform.

This study is conducted at Boston Children’s Hospital, but you can participate from home.

To qualify for this research study, you must

• Be between the ages of 6 and 17
• Have a chronic tic disorder, obsessive-compulsive disorder, or be healthy with no known developmental conditions

Compensation of a $30 debit card is eligible upon completion of all study activities.

If you are interested in participating or learning more about this study, please contact the research team at BCHTicsOCD@childrens.harvard.edu or 617-919-9302

Ecopipam Phase 3 D1AMOND study for children, adolescents, and adults with Tourette’s Disorder

Tourette disorder affects millions of children, adolescents, and adults around the world. Currently approved therapies for Tourette disorder sometimes come with undesirable side effects, so there is a need for more research on this condition.

Scientists are investigating a study drug called ecopipam for adults, adolescents, and children with Tourette disorder. A study drug is one that is not yet approved for use by the general public. Ecopipam is designed to function differently than the currently approved therapies for individuals with Tourette disorder. Scientists want to find out how it works over time and how safe it is for children, adolescents, and adults with Tourette’s Disorder.

Pharmaceutical companies use clinical studies like this one to learn more about study drugs before they are made available to the public. Study participants can help us in this important research.

To qualify for this research study, you must:

• Be at least 6 years old
• Weigh at least 18 kg (39.6 pounds)
• Have been diagnosed with Tourette’s Disorder
• Have both motor and vocal tics

This is only a partial list of study requirements. The study doctor will review the full study requirements with you.

To learn more, please contact Jackie Raguso (Jaclyn.Raguso@childrens.harvard.edu).

Genetics of Neuropsychiatric and Neurodevelopmental Disorders

This research study aims to better understand the genetic causes of neuropsychiatric and neurodevelopmental disorders, including attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), dyslexia, and bipolar disorder. Genetic variants (changes in an individual’s DNA) can alter cells and proteins necessary for normal brain function. By studying the genetic makeup of individuals diagnosed with neuropsychiatric and neurodevelopmental disorders, we aim to identify the genes and variants that may be associated with these conditions. Identifying the genes and variants that lead to abnormal brain function can help us learn about the proteins that are important for normal brain function. We hope that this will lead to better options for diagnosis, management, and treatment for affected individuals and their families in the future.

This study is sponsored by the Children’s Rare Disease Cohort’s (CRDC) Initiative, and the principal investigator is Ryan Doan, PhD. To learn more, please contact the research team at DoanLab@childrens.harvard.edu.

Effect of COVID-19 on pediatric patients with obsessive-compulsive disorder and chronic tic disorders

The purpose of this study was to understand the subjective impact of the COVID-19 pandemic on children with chronic tic disorders and obsessive-compulsive disorder (OCD), and to see whether their experiences differed based on tic and/or OCD diagnoses. Children and their parents were asked to complete a survey that included a combination of validated symptom-based scales, Likert scales, and open-ended questions. They were asked questions regarding the impact of COVID-19 on symptom severity, home life, school, social relationships, use of screens, and overall mental health.

Tomczak KK, Worhach J, Thuy Trang Nguyen S, Liu S, Hoeppner S, Zhang B, Greenberg E. Subjective impact of COVID-19 pandemic on youth with tic and OCD spectrum disorders. Personalized medicine in psychiatry. 2023 Apr 10; 39: 100103. doi: 10.1016/j.pmip.2023.100103. PubMed Central PMCID: PMC10083209.

Katz TC, Bui TH, Worhach J, Bogut G, Tomczak KK. Tourettic OCD: Current understanding and treatment challenges of a unique endophenotype. Frontiers in psychiatry. 2022 Jul 27; 13: 929526. doi: 10.3389/fpsyt.2022.929526. PubMed PMID: 35966462; PubMed Central PMCID: PMC9363583.

Kinga Tomczak, MD, PhD
Program Director, Tic Disorders and Tourette Syndrome Program; Assistant in Neurology, Department of Neurology

Tamar Katz, MD, PhD
Assistant in Psychiatry, Department of Psychiatry

Jennifer Worhach
Clinical Research Project Manager, Department of Neurology