Change lives – support BRIAN
BRIAN will transform the landscape of research into brain tumours and empower patients to take control of their health. Join our revolution.
Pledge your support for BRIAN
Who are we?
Brain tumours are the biggest cancer killer of children and adults under 40. While survival has doubled across all cancers, the 10-year survival rates for brain tumours have barely improved in over 40 years. Yet, shockingly, they receive less than 3% of national cancer research funding.
The Brain Tumour Charity is the world's leading brain tumour charity and is at the forefront of the fight to defeat this disease. We fund pioneering research, raise awareness of the symptoms and effects of brain tumours and provide support for everyone affected.
We're committed to doubling survival within 10 years in the UK and halving the harm that brain tumours have on quality of life. But we can't do this alone. To speed up progress, researchers desperately need access to more and better patient data, and patients themselves need to know about others' experiences so they can make informed decisions and better manage their treatment and care.
BRIAN (Brain tumouR Information and Analysis Network) will achieve this. Read on to find out how.
The power of BRIAN
We hear all too often that people diagnosed with a brain tumour turn to 'Dr Google' for reassurance, but find themselves overwhelmed by the complex and sometimes dubious information available. Patients often feel they have lost control and don't feel informed or empowered enough to make decisions about their treatment and care.
We asked our community whether they would want to share their medical data, even if this only helps others. A resounding 97% said yes. Through BRIAN, people affected by a brain tumour will be able to share their data with researchers, upload information about their treatments and quality of life, and access information on others' experiences.
“Having information tailored to me would have made a massive difference. I would love to use BRIAN to share my medical data – and if BRIAN can help me at the same time, so much the better.”
For researchers and clinicians
Why support BRIAN? Simply put – a cure for brain tumours just can’t wait. Currently, research projects are being hampered by a lack of good-quality data. The process for accessing data is slow, expensive and frustrating, and this means some projects don’t even get off the ground.
Through BRIAN, scientists researching brain tumours will be able to access any slice of data for their project, and clinicians will be able to identify best practice. Having access to all this data in one place will allow scientists to do more research, improve its validity and cut costs – all of which will create a faster path to results, and to a cure for people like Tasha.
“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.”
“Ella was diagnosed with a high-grade medulloblastoma not long after turning three," explains her mum Deborah. “She had surgery to remove the tumour almost immediately, but the cancer had spread."
“Over the following weeks and months she underwent a debilitating set of treatments to try and eradicate the cancer. The effects on her little body were devastating.
“Cancer and treatment became a normal part part of our life and her yearly treatment continued until one 'routine scan' delivered the news that shattered our lives. The tumour had returned.
“Back we went for more radiosurgery and gruelling chemo, and almost every part of her body has been affected.
What you can do for us
There are a number of ways for WCIT Members to make a difference helping The Charity on a pro-bono basis.
These opportunities all depend on the stage of each project phase, the skills you have and the amount of time you're willing to commit. They could include:
- Independent expert advice and guidance
- Expert review of documents and other project deliverables
- Contributing to deliverables that are the core team's responsibility
- Secondment to the core team
- Directly contributing to workshops
- Mentoring core team members
- Providing training
Any support we get from you will be invaluable and will enhance the overall sustainability of BRIAN.
Pledge your support
How your money will help
We need your support to build BRIAN – not just the front-end, friendly web app that patients will interact with on their PC, tablet or smartphone, but the databank powerhouse that sits behind the scenes, connecting patients, researchers and clinicians in the battle against brain tumours.
After giving consent, patients will be able to tell BRIAN about themselves, input data about their treatments and experiences, and tell BRIAN how they're feeling. This information will be captured using standardised, internationally-recognised quality of life measures suitable for research.
Your support will allow people with a brain tumour to see information relevant to their tumour type and help them know what to expect based on others' experiences. And it will also help researchers access all this data and push forward towards a cure.
BRIAN has the potential not just to transform the landscape of research into brain tumours, but to help change how other disease areas are treated globally. In short, BRIAN is revolutionary, and the impact it will have for our community is phenomenal.
Pledge your support for BRIAN
Support from the Worshipful Company of Information Technologists will be invaluable for our project and will enhance its sustainability.
Please fill out this form to pledge your support for BRIAN. By doing so, you can play a vital part in helping people affected by brain tumours – like Graham and his family, and Deborah, who spoke to you about her daughter, Ella. BRIAN will help them get better treatments and better outcomes in the future.
We must do more. A cure can't wait.