Background
A Patient–Clinician Charter on Tumour Tissue Storage and Use has been developed to set out what patients can expect when it comes to how their brain tumour tissue is stored, tested and used. Now we want to make sure the language the Charter uses is clear, consistent and meaningful to the people it matters most to.
We’re holding two small, relaxed online focus groups: one for people with non-malignant or low-grade tumours, one for high-grade.
There’s nothing to prepare — just bring your experience.
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
- No previous research experience is needed- we simply ask that you bring your own experiences and perspectives.
What will you do?
Join brainstrust for this 60 minute session where we’ll walk through the Charter’s six guiding principles together and ask: does this make sense to you? Are these the right words? The outcome will be a glossary to sit alongside the Charter, making it more accessible and consistent for all.
Please note that these workshops will take place online via Zoom. You’ll receive joining details after registering.
