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Tuberous Sclerosis 2000 (TS 2000)
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Sample details

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

Children and young people
Newborns, infants and babies
Patients and clinical populations
Young adults
Dataset details

Country

United Kingdom of Great Britain and Northern Ireland

Year of first data collection

2001

Primary Institutions

King's College London (KCL)

Links

ts2000study.co.uk/

Funders

Autism Speaks

Baily Thomas Charitable Fund

Isaac Newton Trust

Tuberous Sclerosis Association

Ongoing?
Yes

Data types collected

neuroImagingData
mentalHealthData
dataLinkage
Quantitative data collection
  • Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
  • Interview – phone
  • Self-completed questionnaire – unspecified
Qualitative data collection
  • None
Neuroimaging data collection
  • Computerized tomography (CT)
  • Magnetic Resonance Imaging (MRI)
Linked or secondary data
  • Healthcare data
Features

Engagement

  • Community engagement
  • Participant or community advisory groups
  • Keywords

    Child outcomes
    Childhood chronic diseases
    Cognitive impairment and disorders
    Genetic analysis
    Intelligence
    Neurodevelopment
    Paediatric development
    Rare illnesses
    Seizures
    Tuberculosis
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