Tuberous Sclerosis 2000 (TS 2000)
The TS 2000 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 (2001-2005) involved the recruitment and assessment of 125 children aged 0 to 16 years, living in the United Kingdom with TSC. Participants were followed up in phase two (2013-2015), three (2015-2017), and four (2023-2025). Phase four also involved the assessment of additional participants.
Study design
Cohort, Cohort - clinical
Number of participants at first data collection
125 (participants)
Age at first data collection
0 - 16 years (participants)
Participant year of birth
Varied (participants)
Participant sex
All
Representative sample at baseline?
No
Sample features
Countries
Year of first data collection
2001
Primary Institutions
King's College London (KCL) (Academic, United Kingdom)
Links
Profile paper DOI
Funders
Autism Speaks (Third Sector, United States of America)
Baily Thomas Charitable Fund (Third Sector, United Kingdom)
Isaac Newton Trust (Third Sector, United Kingdom)
Tuberous Sclerosis Association (Third Sector, United Kingdom)
Ongoing?
Yes
Data types collected
- Activity log (e.g. food, sleep, exercise)
- Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
- Interview – phone
- Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
- Secondary data
- Self-completed questionnaire – unspecified
- None
- Computerized tomography (CT)
- Magnetic Resonance Imaging (MRI)
- Healthcare data
Engagement
Keywords
