TSC Research: Please participate

Currently, a lot of outcomes are being measured that are not always relevant or impactful to families and individuals with TSC. Help us create a core outcome set for TSC!

The TSC Alliance and Amsterdam UMC are developing a Core Outcome Set (COS) for TSC. Outcomes include symptoms, and how one feels and functions (e.g., sleepiness, cognitive function, behavior). A COS is a minimum set of outcomes that should always be measured at a doctor’s visit or in research. To decide which outcomes are important, we need to gather opinions and experiences from the TSC community.

If you are an individual with TSC or a parent/caregiver of an individual with TSC, please complete this survey. The survey takes 20-30 minutes to complete.

Complete the survey and learn more: https://hubs.li/Q04gHjrJ0