Our involvement in brain tumour research
We are first and foremost a brain tumour support organisation, but we know that good support stems from strong evidence. We also know that people with a brain tumour want to be closer to research, and researchers are bringing patients closer to their work.
brainstrust’s approach: People-first brain tumour research
Ultimately we hope that brain tumour research will lead to a cure for this devastating disease. However it is also possible that we will never find a cure for cancer, let alone for brain cancer. But this could be bearable if we believe that living much, much longer, with a vastly improved quality of life comes first.
This is where we know research can help today. It is work here that we support through funding, and through facilitating patient and public involvement and engagement with PRIME (brainstrust’s Patient Research Involvement Movement). To date, PRIME has helped attract £17m of investment into research. This group, with the support of the National Institute for Health Research (NIHR), the James Lind Alliance (JLA) and Cochrane has also established what’s needed.
These collaborations have identified the top 10 priorities for clinical research. Cochrane has carried out evidence reviews on 8 of these priorities and we know what needs to be done next.
This vital work has told us that:
- Diagnosing brain tumours promptly safely and accurately is important
- You want to know more about the risks and benefits involved in making decisions about care and treatment
- You need to know what the best thing to do is when decisions about treatment are difficult.
We listen to what you tell us, and collaborate to bring investment as well as fundraising for impactful research today.