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.
Quick Links
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.
Research priorities
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.
The vital work has told us that:
Meet PRIME
brainstrust’s Patient Research Involvement MovEment (PRIME) has helped to attract £17m of investment into brain tumour research. This vital movement actively supports the research community with their work to secure funding; the campaign for more investment in research; and it ensures clinical research projects are aligned with patient need.
We are now seeing unprecedented demand from the clinical and research community for input into trial and research proposals. This is to ensure that their goals and methods reflect what people want when they are living with a brain tumour. Funding is now inaccessible without this patient and public perspective. We do this effectively, attracting significant funding to brain tumour research projects and collaborating with research focussed clinical teams with whom we share our expertise and build capacity so that more people can be involved in research.
Now, more than ever, people want to be closer to research
“Now, more than ever, people want to be closer to research so that they can feel engaged with their care and their condition, ensuring that they understand the landscape and that they aren’t missing out.”
brainstrust’s research and evidence
We know that good support comes from strong evidence. We’re really proud to be involved in a growing body of clinical evidence that demonstrates the need for impactful emotional and pragmatic brain tumour support. Here is our library of published research that has involved brainstrust.
The range of topics the following research covers include:
Stay up-to-date with the latest research news
We are passionate about making clinical research accessible, that’s why every week we produce our ‘Weekly Brew’- the brainstrust research newsletter. Every week we compile a expertly curated, jargon-free, accessibly written run down of all the most recent relevant research.
Receive it straight into your inbox, fill out our get in touch form and make sure to opt-in for research.
Excellence, together
We know that partnerships and signposting create incredible impact in reach beyond our size.
Meaningful collaboration and co-creation is a key component of our approach as we work to secure the best outcomes for anyone who is living with a brain tumour. Our work supporting the development of impactful, person-centred clinical research is supported and enhanced by a rich network of partnerships. Find out more about how collaboration is helping us secure the best outcomes for people living with a brain tumour.
Latest news
Help fund our mission
of people told us that this information has helped them feel more resourced and in control
*61 out of 64 of survey respondents
by donating only £3 a month, helps us keep this information up to date.