Every Patient is a Research Patient

Our aim was to make sure every patient was able to contribute to research and clinical trials, as this gives them faster access to treatments, better care and the opportunity to help defeat this disease.

Over the past five years, we have:

Launched BRIAN, our pioneering databank and app, to harness the power of patient data. Since its public launch in late 2019, we have had over 2,000 users (and rising) using the app to help manage their experience, contribute their data towards a cure and use insights from millions of NHS and Public Health England records

Established our Research Involvement Network (RIN), a collaboration between researchers and patients. Since 2015, its 211 members have been involved across 170 research projects including all of the research applications for our funding

We set an ambitious target

70% of patients living with a brain tumour contributing to research (baseline: 24% in 2016)

  • 24%2016

How did we do?

  • 42%2020

of patients in the Patient Guide Survey have discussed clinical trials, been offered biobanking, or had biomarker testing

However, it has been difficult to track all patient research activities

BRIAN: a game-changing app

BRIAN is an app to help people cope with a brain tumour and power a cure.

By combining national healthcare records with user-input data, BRIAN forms a unique, interactive tool that offers support and information for those affected while providing researchers with critical data.

This allows researchers to better understand people’s quality of life when living with a brain tumour diagnosis. They can use this collective experience of patients, together with national healthcare records, to drive forward research into brain tumours and accelerate progress towards a cure.

BRIAN will provide an invaluable resource for shared information and knowledge amongst clinicians and patients across the world, to accelerate research and progress, meet the needs of our patients and ultimately defeat this most difficult of diseases

Professor Keyoumars Ashkan, Professor of Neurosurgery, King’s College Hospital, London

BRIAN has been useful to keep a check on Elsie’s side effects from treatment

Mike’s daughter, Elsie, is two years old and was diagnosed with ependymoma

BRIAN helps people with memory loss to keep all of their information in one place

Molly, aged 18 when first diagnosed with a grade 1 pilocytic astrocytoma, found out about BRIAN via the Young Adults’ Facebook Page

What is BRIAN and why is it so important?

BRIAN’s objectives are to:

  • Enable our community to share data and make better informed decisions
  • Build a platform for co-mingling quality of life data and national datasets
  • Improve outcomes and accelerate a cure by giving open access to timely, high-quality data, securely and ethically