Welcome to BRIAN

BRIAN (the Brain tumouR Information and Analysis Network) is an online app which has been developed by The Brain Tumour Charity to help people cope with a brain tumour. BRIAN will help you - and those supporting you – to understand how you are doing and to make better informed decisions.

BRIAN Features

Here are just some of the features you'll find in BRIAN.

Calendar

See events, treatment & care entries and much more.

Quality of life

Track quality of life, including symptoms and emotions.

Insights

See insights derived from national data sets and user input.

Challenges

Complete challenges on a daily basis to keep your brain active.

Treatment and care

Keep track of treatments, appointments and medications.

Side-effects

Track side-effects felt from medication or treatments.

Questionnaires

Help researchers and The Charity by completing questionnaires.

Tumour log

Record information about tumour(s) and how they change.

Clinical trials

Find clinical trials and track trial involvement.

Benefits

Keep track of benefits and assistance received.

Invite users

Invite healthcare professionals or others to access your data.

Training videos

Watch training videos if you need help with using BRIAN's features.

Is BRIAN for me?

BRIAN has been designed for all kinds of people, whether you are living with a brain tumour, caring for someone who is, or you work in healthcare or research.

Recently diagnosed?

BRIAN's tools, like the Benefits Checker and Clinical Trials Finder, offer information that may be difficult to find.

BRIAN's insights provide information about others on the same journey.

Having treatment?

BRIAN can help you keep track of treatments, appointments, medications, side-effects and wellbeing.

This information can be quickly and easily shared with healthcare professionals.

Lost someone?

You can contribute valuable historical information to BRIAN's database, by sharing details of treatments and quality of life.

Questionnaires in BRIAN provide researchers with even more information.

Support

You can share your BRIAN information with carers, family members or healthcare professionals.

The visualisations in BRIAN help to convey how things have been since the last appointment.

Research

BRIAN supports researchers by granting them access to anonymised user-entered patient outcome and quality of life data.

BRIAN will provide cost-free access to data sets from national healthcare organisations.

How sharing your experience helps

Both NHS Digital and Public Health England have allowed us access to data of brain tumour patients over a period stretching back 10 years. This valuable data has allowed us to produce fascinating insights relating to diagnosis and treatment.

By recording and allowing access to your anonymised data, researchers will better understand people’s quality of life when living with a brain tumour diagnosis. They can also use the collective experiences of patients to drive forward research into brain tumours and accelerate progress towards a cure.

Sign-up

Our credentials

NHS Digital Data Security and Protection Toolkit

GDPR Compliant

Data securely managed by Microsoft Azure (ISO 27001 certified)

UK Health Research Authority Research Ethics Approval

Commended for good practice by auditors from NHS Digital

Member of the UK Health Data Research Alliance

Third Sector Awards Breakthrough Nominee 2020

Charity Times Awards Best Use of Technology Nominee 2020

Our data partners

Our research partners

NHS Trusts using BRIAN

Our techology partners

Endorsements

Aisling Burnand, MBE – CEO of Association of Medical Research Charities

"So great to see the progress of BRAIN. It’s an amazing achievement – ground-breaking and hopefully will inspire others."

Katie Bushby - Programme Lead at the Tessa Jowell Brain Cancer Mission and Emeritus Professor of Neuromuscular Genetics at Newcastle University

"We found BRIAN and the access it provided to people’s real-life experience of different centres invaluable when looking at the applications for Tessa Jowell Centre of Excellence status. The ability to look at how patients and families feel about the care they are receiving over time adds a whole new dimension to the way we can assess centres now and in the coming years. It’s also great to know that BRIAN is providing a tool to help people manage their condition and how it makes them feel. This is something that we would have appreciated when my husband had been diagnosed with his glioblastoma. BRIAN is a fantastic research tool but also so much more in the way it feeds back to its participants in real time."

Prof Keyoumars Ashkan – King’s College Hospital

"BRIAN is a very useful tool and we are already using it at King’s in a variety of ways. BRIAN links up with a whole spectrum of different registries and databases; the Cancer Registry, databases from Public Health England, from various hospitals themselves - it brings all that data together. BRIAN sees and pushes the right information through to patients. It looks at their tumour, needs, and provides them with the information relevant to them."

Dr Paul Brennan, Senior Clinical Lecturer in neurosurgery at the University of Edinburgh

"With this project, researchers will for the first time have access to large amounts of data from lots of patients. This is game-changing for research into brain tumours, permitting researchers to ask questions and test hypotheses on a database that is more representative of the ‘real-world’ than ever before."

Peter, who lost his wife Wendy, to a brain tumour

"Being able to help others to avoid some aspects of this awful disease is satisfying and motivating."

Molly, diagnosed with a grade 1 pilocytic astrocytoma

"Using BRIAN was a good way to keep track of things, as I’ve suffered with memory issues since starting treatment. I’ve entered medication, symptoms, side-effects and mood tracking information."

Mike, whose daughter Elsie was diagnosed with a pilomyxoid astrocytoma

"BRIAN has been useful to keep a check on Elsie’s side-effects from treatment and we’ve also been completing the quality of life questionnaires. Keeping a record of appointments and treatments has reminded us of her progress so far. It helps to keep track of the burden of treatment and puts things into perspective when things are difficult."