The TS 200 Study aims to document and describe the lifetime of someone with Tuberous Sclerosis (TSC), and to identify factors that may lead to intellectual, cognitive, and psychiatric difficulties. Phase one began with the recruitment of 125 children aged 0 to 16 years, living in the United Kingdom (UK) with TSC. In 2013, phase two marked the first follow-up, during which baseline assessments were repeated. Phase three followed in 2015, and most recently, in 2025, phase four involved another round of baseline assessments, due to be released soon. In addition to baseline assessments in phase four, TS-2000 is also conducting online focus groups and testing of a mobile app on new participants living with TSC.
Study design
Cohort, Cohort - clinical
Number of participants at first data collection
125 (participants)
Age at first data collection
Varied (participants)
Participant year of birth
Varied (participants)
Participant sex
All
Representative sample at baseline?
No
Sample features
Country
Year of first data collection
2001
Primary Institutions
King's College London (KCL)
Links
Profile paper DOI
Funders
Autism Speaks
Baily Thomas Charitable Fund
Isaac Newton Trust
Tuberous Sclerosis Association
Ongoing?
Yes
Data types collected



Engagement
Keywords