TSC Research on what matters most to people with TSC and Epilepsy

Professor Sam Amin and his team at Bristol want to learn what matters most to people with TSC and epilepsy and their families when taking part in epilepsy research.

We’d hugely appreciate if you can complete the survey by clicking on this link https://redcapsurveys.uhbw.nhs.uk/surveys/?s=MCCY4YCCLE34MML9

A lot of past and current research doesn’t capture the whole picture of what it’s like living with epilepsy every day, which this study hopes to change. The survey also looks to understand your thoughts on clinical trials, your feelings about placebo groups, and your awareness of emerging treatments like gene therapy.

You can take part in the survey if you’re:

An adult living with TSC and epilepsy

A parent, carer, or family member of a child or adult living with TSC and epilepsy

The survey takes less than 10 minutes to complete, and your participation is completely anonymous. At the end, there is an option to enter your email address if you would like to be contacted about studies in the future, but this is completely optional.

By taking part, you’ll be helping to make a big difference to the future of TSC research.