Take Part

Interested in taking part?

Our next study: "Assessing Young Adults with TSC using Smartphones: A Feasibility Study" is now open for recruitment!

Interested in what is happening currently in the TS 2000 Study?

Check out our new video detailing what has happened so far in the TS 2000 Study, how it can help those with TSC and what we are looking to achieve in phase 4 of our study.

Phase 4 (2023-2024)

The individuals with TSC who have participated so far in the project have now reached young adulthood. We know that young adulthood is a key transition period, and we want to gather information on what young adults with TSC everyday experiences are like. This study aims to understand how a new smartphone app may help monitor mental health and behaviour symptoms in young adults with TSC.

We know from previous research that young adults with TSC are more likely to face difficulties with mental health symptoms such as low mood and anxiety. We want to try and develop a new way of monitoring these feelings and experiences using a smartphone app. We think using this app may better reflect the daily life experiences of young adults with TSC. We then hope this information will lead to more personalised, tailored treatment and support.

To start off phase 4, we invited young adults with TSC to join us and discuss their thoughts and opinions about using smartphones to monitor their experiences. We wanted to know what they would want monitoring e.g., mood and what support they would need to use a smartphone to monitor these experiences. This information has helped us to design the main study of phase 4 in a way that reflects the needs of the young adult TSC community.

We also know some individuals with TSC have difficulties with using smartphones or being able to monitor their own feelings and experiences. In these cases, we also wanted to know if it would be useful to the young people with TSC to have someone also using the app to monitor the young adult with TSC experiences. So we invited Key Support Persons 'KSP' of young adults with TSC to participate in the focus groups to hear their opinions about using this smartphone app. The results of this study will be released soon!

We are now inviting young adults with TSC to test out a smartphone app for 14 days. The app will ask you 4 questionnaires a day and will ask you many different things such as how you are feeling and what you are doing. If you are interested in taking part, please see the top of the page for more information!

Please click here to see the advert for our study.

Please click here to see the Participant Information Sheet.

Please click here to see an Easy read version of the Participant Information Sheet.

Please click here to see a flowchart of what will happen if you take part in the study!

If you want to take part, please click here!