Research Involvement Network

By getting involved in research you can help ensure that future research programmes meet the needs of those affected by brain tumours. Through ensuring that we hear the views of those affected as well as researchers and clinicians, together we can make sure that research remains relevant and reflects the needs of our community.

Experts through experience

Your experience of living with a brain tumour or caring for a loved one can provide a vital and different perspective to researchers when shaping or evaluating new programmes of research. You don't need to know about research or have an in-depth understanding – you will bring a wealth of information through your experience and the perspective that this will bring – this cannot be underestimated and is extremely valuable.

What's involved?

You will have the opportunity to participate in research in many different ways. These could include:

  • Reviewing research applications and feeding back on the importance of this based on your experience.
  • Taking part in a panel discussion, where you will be able feed back on your personal experiences to help inform the direction of the project.
  • Reviewing lay summaries, which is a short summary of a study or clinical trial to help explain its detail to people who do not have a medical background.
  • Helping us build links between researchers and those affected by brain tumours.
  • Share your experience of being a Research Involvement Network Member to encourage others to get involved.

Being involved in research is vital in moving forward to help with early diagnosis and treatment of brain tumours. It was great to be involved in this group, for our experiences to be useful and to feel like we were giving something back. It’s really important that families, clinicians and researchers pull together to help direct future research and help in the fight against brain tumours.

Deborah, whose daughter was diagnosed with a brain tumour aged 3

Who can join?

Anyone who has either been diagnosed with a brain tumour or has cared or is caring for someone with a brain tumour.

You don't need a scientific or research background; you are an expert through your experiences and your contribution is invaluable whatever your background.

We ask that you are able to:

  • Communicate with others and listen to others views, even when they do not always agree with your own
  • Help us develop and improve our Research Network and wider services
  • Share with researchers your experiences to enable developments in research which could benefit the brain tumour community.
  • Shape the future of brain tumour research

We will provide you with the support that you need to take part and try to accommodate people as much as possible to ensure that we get a wide range of views in everything that we do. Our Support & Information Team are here to answer any questions you may have about the projects that you are asked to take part. To get in touch, please see our Support and Info line page.

There are other ways to contribute to research and you may be eligible for a clinical trial. We have a Clinical Trials and Research Info Line that you can call, as well as a database with the latest clinical trials information that you can search to see if you may be eligible.

Apply now

To apply to be part of the Research Involvement network please complete the relevant application form. Once you have submitted this form, you will be contacted by someone from the charity within three working days.

You can also contact us at if you have any questions and we will gladly assist in any way possible.