Currently, a lot of outcomes are being measured that are not always relevant or impactful to families and individuals with TSC. Additionally, when many different outcomes are being measured, results from studies cannot be combined or compared to make informed decisions about treatments.
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. Your participation is highly valued, and your perspective can make a difference.
This is an online anonymous survey that takes approximately 20-30 minutes.
This survey consists of two parts:
- Part 1 is to rate the importance of outcomes. If you complete this survey, you will be asked to participate in the second round in June.
- Part 2 is to reach consensus, and will include anonymous summaries of responses, allowing you to adjust your answers if you wish.
Complete the survey here: