People affected by a brain tumour diagnosis have an important voice in shaping research, influencing policy and improving support for others.
By sharing your experiences, contributing to research, or signing a petition you can help ensure that the needs of people affected by brain tumours are better understood and represented.
On this page you’ll find current opportunities to take part in research projects, surveys and Government petitions connected to brain tumours. These initiatives are led by organisations, researchers and members of the community who are working to improve treatment, understanding and support.
This study is funded by Cancer Research Wales, and led by Stephanie Sivell (Cardiff University) and Ameeta Retzer (University of Birmingham). They are currently recruiting participants for an online Delphi survey to help identify the outcomes that matter most to people living with glioma. The intention is to reflect the experiences, needs and priorities of those most closely affected and inform routine clinical practice in the UK.
· People living with glioma
· Partners/family members/friends of people with glioma
· Health care professionals involved in glioma care (including clinicians, nurses and allied health care professionals)
· Researchers involved in glioma or brain tumour research
· Professionals working in third sector organisations supporting the brain tumour community
· Professionals working in health service delivery and commissioning
Participation involves completing two rounds of online questionnaires. The first round has now closed and anyone who took part in this will be invited to complete the second round shortly.
However, if you missed this you but would still like the opportunity to be involved, there will be workshops coming up in autumn 2026. If you would like more information about participating in these please register your interest via the link below:
Register your interest
The project, which is being undertaken in collaboration with the computational oncology group at Imperial College London, seeks to explore information about brain tumour patients in the UK who are seeking treatment outside of the NHS/UK standard of care.
1) While it’s known that some brain tumour patients do explore or undergo treatment outside of the NHS, there is a lack of data on how widespread this practice is, the financial implications, the types of treatments being pursued and information on patients’ decision-making around these treatments.
2) Therefore, through this study, they aim to start collecting data on these issues to determine whether there is an unmet demand for these treatments that the NHS is not currently meeting. To collect this data, they have constructed a simple questionnaire which can be completed online.
For this phase, they are looking for UK adults (18 or over) who would be eligible for NHS treatment. They welcome responses from either patients, caregivers or caregivers of former patients. They are interested in hearing from you, even if you haven’t had treatment outside of the NHS, as they must hear both perspectives. Please scan the QR code or follow the link below to access this survey.
Go to the survey
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