COS4TAND - Research Participation Opportunity

Written By Mary Vasseghi

We are looking for individuals with tuberous sclerosis complex (TSC) and their caregivers to participate in an online focus group or interview to identify important outcomes for people with TSC.

The Anya’s Accelerator “COS4TAND” project aims to improve TSC care and research by standardising how we define, monitor and measure outcomes in people with TSC. This project aims to develop a tool to better measure and monitor TAND symptoms, enabling quicker detection of challenges, providing more personalised care, and ultimately improving quality of life for people with TSC.

  • Focus groups and interviews will take place virtually on Microsoft Teams.

  • Focus groups and interviews last approximately 30 minutes (children) to 1 hour (adults/parents/caregivers).

  • Focus groups are in English, interviews can be in another language with an interpreter.

  • Sessions are planned for December 2025 (please follow the link below for dates).

  • Participants will receive a $20 gift card after participation.

Who can participate?

  • Individuals with TSC (aged 8-12) *accompanied by an adult

  • Individuals with TSC (aged 13-17) *accompanied by an adult

  • Individuals with TSC (adults)

  • Caregivers of an individual with TSC

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Mary Vasseghi
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