Background

PRIME by brainstrust is supporting researchers who are taking the very first steps towards testing a potential new drug treatment for sporadic vestibular schwannoma (VS).

The first study being planned is very early stage and would involve just six people who are already due to have surgery. It will explore the safety of the treatment, how it behaves in the body and its effects within the tumour. While this is a small first study, what researchers learn could help determine whether the treatment progresses to larger studies.

At this early stage, there are important decisions still to be made. Researchers want to hear from people affected by VS about whether the proposed study feels acceptable, what would matter when deciding whether to take part, and what a future treatment would need to achieve to make a meaningful difference.

Who can get involved?

We are looking for people living with a sporadic vestibular schwannoma, as well as caregivers, family members and loved ones.

No previous research experience is needed. We simply ask that you bring your own experiences and perspectives.

What will you do?

Join a 90-minute online workshop with brainstrust to help shape the proposed research.

We’ll explore how you feel about taking a new treatment before planned surgery, when it is not yet known whether it will benefit you; what side effects and practical demands feel acceptable; and what you would most want a future treatment to achieve.

This will be a small, informal conversation with no scientific knowledge needed. We want to understand what matters to you while there is still an opportunity to shape the research.

Please note that these workshops will take place online via Zoom. You’ll receive joining details after registering.