The TSC Alliance hosted a webinar on May 13, 2024 about two studies on understanding and treating TSC-associated neuropsychiatric disorders (TAND), with a specific focus on behavior problems in children and adolescents with tuberous sclerosis complex (TSC). Both studies are currently enrolling participants.

The RAINBOW study is a fully remote study focused on understanding and treating behavior problems in 3- to 6-year-old children with TSC. The first goal of the study is to learn about how best to measure behavioral challenges in TSC and how common these behaviors at preschool age. They are also carrying out a pilot clinical trial of internet-based Parent-Child Interaction Therapy to learn about whether this treatment is helpful for reducing behavior problems in young children with TSC and what adaptations may need to be made.

Regulating Together in Tuberous Sclerosis Complex: A Pilot Feasibility Study in Children and Adolescents with TSC-Associated Neuropsychiatric Disorders (TAND) is trying to identify and characterize emotion dysregulation in TSC children and adolescents with TAND who exhibit interfering, difficult to manage behaviors and symptoms and to optimize Regulating Together for treatment of emotion dysregulation in TSC.

Presenters: Nicole McDonald, PhD, Clinical Psychologist and Assistant Clinical Professor in the UCLA Semel Institute; Kristn Currans, PsyD, Clinical Psychologist at Cincinnati Children’s Hospital Medical Center; and Jamie Capal, MD, Associate Professor of Pediatrics and Neurology at the University of North Carolina at Chapel Hill and the Carolina Institute for Developmental Disabilities Download the presentations:

Download the RAINBOW study presentation

Download the Regulating Together in Tuberous Sclerosis Complex (RT-TSC) presentation

To learn how to get involved in these two studies please contact the study coordinators below:

RAINBOW Study: Viviana Rodriguez at vivianarodriguez@mednet.ucla.edu or by phone 424-326-3118.

Regulating Together in Tuberous Sclerosis Complex (RT-TSC): Julia Flynn at TSCResearch@cchmc.org, subject line: RT-TSC

To find out more about TSC clinical trials taking place, click here.

Thank you to our TSC Navigator supporters:

Northstar Sponsors

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Cardinal Sponsors

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Directional Sponsor

  • Noema