Background
How should brain tumour tissue be stored and used for research?
When someone undergoes surgery or a biopsy for a brain tumour, the tissue collected can be incredibly important for research. It can help scientists better understand brain tumours, develop new treatments and explore opportunities for more personalised care.
But what happens to that tissue afterwards? Where is it stored, who can access it, and how are decisions made about its future use?
Brain Tumour Research is undertaking a UK-wide review of tissue biobanking — how brain tumour tissue is collected, stored and made available for research. Alongside this work, brainstrust is bringing together people affected by brain tumours to ensure their experiences, perspectives and priorities help inform the review and its recommendations.
We want to hear what matters to you.
Who can get involved?
We are looking for:
- People living with a high-grade brain tumour.
- Caregivers, family members and loved ones of someone affected by a high-grade brain tumour.
What will you do?
Join brainstrust for a small, relaxed online conversation exploring what matters to people when brain tumour tissue is donated, stored and used for research.
- What matters most to you when your tumour tissue is collected, stored and used for research, both now and in the future?
- Trust and choice: Does it matter where tissue is stored, who looks after it and who can access it for research?
- Future opportunities: How important is it that tissue remains available for further testing or potential clinical trial opportunities?
- Research priorities: As technologies such as genetic testing, artificial intelligence and personalised medicine develop, what would you most want researchers to consider?
- Getting it right: What should change about how brain tumour tissue is stored, shared and used to better reflect the priorities of people affected by brain tumours?
There are no right or wrong answers. We’re interested in your thoughts, experiences and questions, whether you’ve previously donated tissue for research or have never considered what happens to it.
Why is it important to be part of this conversation?
As research advances, access to well-stored brain tumour tissue is increasingly important. Getting this right isn’t just about supporting scientific progress. It’s also about trust, choice, transparency and ensuring that decisions reflect the priorities of people affected by brain tumours.
Your contributions will help identify what matters most to the brain tumour community and inform the wider UK tissue biobanking landscape review.
Please note that these workshops will take place online via Zoom. You’ll receive joining details after registering.
