Research, surveys and petitions

Brain tumour research, surveys and petitions

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.

The Big Conversation on Care

What is the Big Conversation?

The Big Conversation is a project about adult social care in England, and it’s being run by the Independent Commission on Adult Social Care (also called the Casey Commission). In order to know how make social care better they want as many people as possible to take part.

Who can take part?

The project wants to hear about adult social care from lots of different people across England, to share your ideas and help make social care work better. So it might be that you:

• Use adult social care
• Work in care
• Care for a family member or friend

Equally, you do not have to know anything about adult social care, you might just want to share how you or a loved one would want care in the future.

How can I take part?

You can take part online via the link below.

You will be asked this question: When we are old, disabled or have a serious illness, who should support us and how? and you will need to create an account to submit your idea and take part.

In answering the question, you can share your own ideas, and you can also see other people’s ideas and say if you think they are good or bad. It’s an opportunity to talk about what support you need and how you like to get support.

The Big Conversation is open for submissions until 20 September 2026.

Research project about seeking treatment outside of the NHS/UK standard of care

OurBrainBank UK has launched their latest research project.

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.