How to participate?

  • Click above on the button "Ready to take part"
  • Send an email stating that you want to participate.
  • Fill in the consent form.
  • An online survey taking around 30–40 minutes
  • Fully remote: complete it from any device, at any time, you can pause and come back whenever suits you
  • Your responses are anonymous and your data will remain confidential
  • Participants who complete the survey receive an honorarium.
When regulators decide whether to approve a new treatment, clinical trial results are only part of the picture. They also need to understand what living with the condition is actually like.

This study gives you a direct way to contribute your understanding: what symptoms affect you most, what improvement would mean to you, and what would be more meaningful.

Why does it matter?

For a rare condition like TGCT, patient numbers are small which means every response carries real weight. The data collected in this study will be presented directly to regulators as evidence of what the TGCT community needs from future treatments.
Who can take part?

The study is open to adults living with TGCT. You do not need any prior experience with research or clinical studies.