The TS2000 Study
(The Tuberous Sclerosis 2000 Study)
Information about the TS2000 study and how you can get involved in phase 4
The TS2000 project is led by Dr Charlotte Tye and her team at Kings College London. Beginning in 2000, it’s the very first study that is following the development and experiences of people with TSC across their lives.
Phase 4 of the study will soon begin. Charlotte and her team are looking for people to be involved. Read more about the study below or click here to contact the team.
About the study
Although we already know lots about TSC, there’s very limited existing research that tracks how TSC develops in a person over their life – especially when TSC is first diagnosed in childhood. The TS2000 Study is hoping to change this.
The TS2000 Study is the first formal piece of research to track how TSC affects people throughout their life. At the start of the study, children aged 0–16 years were invited to take part and since then lots of information on their TSC has been tracked. This has included things like their TSC-related epilepsy, their intelligence and mental health.
Click here to read more about the wider TS2000 study and the findings so far
TS2000 Phase 4: Recruitment is now open!
Young adults with TSC are more likely to face difficulties with mental health than those without the condition. TS2000 Phase 4 aims to understand how a new app might help monitor mental health and behaviour symptoms in young adults with TSC. It’s hoped that using the app will lead to more personalised and tailored treatment and support for mental health challenges in TSC.
Before commencing phase 4, the research team is inviting young adults with TSC to share their views on what the app should do and how it should act. The researchers like to know things like what sort of monitoring it should track, and how people are most likely to use the app. The researchers will then design the app based upon this feedback. Taking part takes place completely online, so there’s no need to travel anywhere.
To take part, you must:
- Be aged between 16 and 35 years old
- Have a diagnosis of TSC
You can find more information and register your interest to take part here.
Make a one off or regular donation
£10 Can allow us to send a welcome pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.
£25 Can help us develop materials that are included in our support services, flagship events or campaigns.
£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.
To provide help for today and a cure for tomorrow