Open

Regulating Together in TSC

In this study, we want to learn more about a program designed for children diagnosed with Tuberous Sclerosis Complex (TSC) and Emotional Dysregulation (ED). The program involves remote-based, small group interactions with children ages 8-18.

Age & Gender

8 years ~ 18 years
Male, Female

Location

United States (Nationwide)

What will be asked of you

You and your child will participate separately in remote group sessions. There will be an in-person screening visit where there will be questionnaires and neuro-psych testing, all other visits will be remote.

Incentives

Gift card at completion of study, up to $250, Travel reimbursement

In-person visits:
1

Phone or online visits:
Up to 17

Total length of participation:
2 years

Looking for Specific Volunteers

Able to participate:

Your child has a documented diagnosis of TSC
Your child has symptoms of behavioral dysregulation
You and your child are willing to participate in group sessions
Access to computer, phone, tablet with video capability

Not eligible if:

Participants have not initiated or plan on start new psychosocial intervention within 30 days
Potential self-injurious, suicidal, aggressive, disruptive or sexual behaviors
New medication treatments less than 4 weeks prior to starting program

Contact the Team

Visit Location

Contact & Visit Location

Primary Contact

Primary Visit Location

Carolina Institute for Developmental Disabilities
101 Renee Lynne Ct, Carrboro, NC 27510, USA

Additional Study Information

Principal Investigator

Jamie Capal
Neurology-Pediatrics

Study Type

Behavioral or Social
Interventional

Study Topics

Behavior
Genetics and Genetic Disorders

IRB Number

23-0274

Copyright © 2013-2022 The NC TraCS Institute, the integrated home of the NIH Clinical and Translational Science Awards (CTSA) Program at UNC-CH. This website is made possible by CTSA Grant UL1TR002489 and the National Center for Advancing Translational Sciences.

Helpful Links

Questions?

This email address is being protected from spambots. You need JavaScript enabled to view it.