Study News

TSC Advisory Group

As part of phase 4 of the TS 2000 study, we hired two young adults with TSC to help us design the smartphone app study.

The advisors attended seven online meetings.
They co-developed the design of the EMA study, including;
- Helping design recruitment materials (advert, participant information sheets).
- Testing out the app.
- Deciding what questions should be asked and how.
- How the data should be analysed.
- How we should share the results with the TSC community.
After each meeting, evaluation forms were completed to guide the running of the group.
After seven months, they attended an external reflection with a charity representative to chat about what they liked and didn't like about the advisory group.
They also attended an in-person workshop in London to evaluate the advisory group and create guidelines to help others working with young adults with rare genetic conditions.

From the workshop, two guidelines were created:

How to run a smartphone EMA study for young adults with a rare genetic condition.
Young adults with genetic conditions are underrepresented in smartphone EMA studies. To support future research, we have created guidelines to help young adults with rare genetic conditions take part in EMA studies and to help researchers run successful EMA studies with young adults with rare genetic conditions.
How to run an advisory group for smartphone research for young adults with a rare genetic condition.
Young adults with genetic conditions are underrepresented in Patient and Public Involvement (PPI). To support future research, we have provided an overview of our experiences from both the advisory group members and the researcher.