Here are just some of the features you'll find in BRIAN.
Quality of life
Track quality of life, including symptoms and emotions.
See insights derived from national data sets and user input.
Complete challenges on a daily basis to keep your brain active.
Treatment and care
Keep track of treatments, appointments and medications.
Record details of seizures and log when they occur.
Track side-effects felt from medication or treatments.
Help researchers and The Charity by completing questionnaires.
Record information about tumour(s) and how they change.
Find clinical trials and track trial involvement.
Keep track of benefits and assistance received.
Invite healthcare professionals or others to access your data.
Watch training videos if you need help with using BRIAN's features.
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.
"So great to see the progress of BRIAN. It’s an amazing achievement – ground-breaking and hopefully will inspire others."
"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."
"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."
"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."
"I work as a Clinical Research Nurse for Barts Health NHS Trust and I have used the BRIAN app to improve patient experience and outcomes for glioblastoma patients. From a user standpoint, the app is simple and easy to use.
First of all, thank you very much for what you have built, this is an amazing resource for brain tumour patients, families, and care providers. The BRIAN app has a lot of potential as it continues to improve. There are not enough words as to how much you have helped thousands of people with this application."
"Being able to help others to avoid some aspects of this awful disease is satisfying and motivating."
"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."
"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."