New discoveries: 231 research publications sharing new knowledge on brain tumours; 53 new research tools and methods, and 10 new research databases to enable global collaboration and efficiency
Turning discoveries into better treatment: 11 new medical products, interventions and clinical trials; 5 software and technical products
Stimulating more research: 87 research collaborations and partnerships plus £89m of additional funding into brain tumours from others
Invest £20 million from 2015 to 2020, later increased to £32.5 million
Invested £38 million up to March 2020
The majority (73%) we have spent on increasing scientific understanding, with 19% on clinical research (translating knowledge into treatments) and 8% on quality of life research. We would like to increase the focus on clinical and quality of life research, to help turn knowledge into treatments and improvements in quality of life, but are hampered by a lack of high-quality applications for funding.
The incidence of brain tumours is roughly 50/50, between high and low grade. People live longer with a low grade tumour but can often have a very poor quality of life (approximately 80% of the 88,0001 people estimated to be living with a brain tumour in the UK have a low grade tumour). 54% of our research is committed to high grade tumour types and 20% to low grade, with 26% to both.
1 Prevalence has been estimated for malignant and non-malignant brain and CNS tumours using the latest data on UK cancer registries for England, Scotland, Wales and Northern Ireland in 2020. Enquiries on the estimate to be directed to The Brain Tumour Charity.
It is a requirement that our larger research grants are based on collaboration between research teams. 68% of our research is conducted by multi-country (at least two countries) collaborative teams, enhancing the spread of ideas and productivity of the research.
Brain tumours are the biggest cancer killer of the young (under 40) age group,1 resulting in much higher average years of life lost compared to other cancers and diseases of unmet need (see Goals). Although childhood brain tumours represent only 5% of the total incidence of brain tumours, 44% of our research is spent in this area.
1Cancer Research UK, https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/brain-other-cns-and-intracranial-tumours/survival, (Data: England and Wales, 2010–2011, ICD-10 C71 – malignant tumours) Accessed June 2018
We cannot detail all of the research impact outlined above, but below is a case study of our pioneering research and further examples to explore.
Across three institutions and led by Dr David Jones, an expert in molecular biology, The Everest Centre is a ground-breaking international initiative established in 2017 to propel our understanding and improve treatment of paediatric low grade brain tumours.
So far, The Everest Centre team have:
Rob Ritchie (right), founder of Everest in the Alps with Phil Spencer (left), TV presenter
Toby Ritchie was diagnosed with a low grade brain tumour at the age of five. In 2015, his dad – Rob – led a unique and physically demanding challenge – Everest in the Alps – to raise money for The Brain Tumour Charity. The team has now raised millions towards The Everest Centre:
“We are thrilled that the money raised through Everest in the Alps is being used to establish The Everest Centre. This pioneering research will allow scientists to accelerate progress towards finding more effective treatments for the disease and could be revolutionary in improving the lives of children living with low grade tumours.”
Rob Ritchie, founder of Everest in the Alps
A highlight: We helped found, and have invested £2.8m in, The Tessa Jowell BRAIN MATRIX, a pioneering clinical study and biobank, providing a platform to trial precision medicines.
The BRAIN MATRIX, running from 2019 to 2023, provides a common infrastructure across at least ten key treatment centres in the UK, with all participants starting by having their tumour tested for its biological and genetic profile. This platform can then be used for additional clinical trials, while not being unduly expensive, meaning more people can be offered potentially beneficial drugs.
Through the implementation of BRAIN MATRIX, we will work to deliver routine biobanking for adults with a brain tumour, to further accelerate research and improve both survival and quality of life for those affected.
A highlight: Our funded research has created a tool to predict meningioma recurrence.
Dr Gelareh Zadeh and her team analysed over 500 meningioma samples to find DNA changes that result in tumour growth. Combined with clinical images, this molecular data gives a five-year recurrence score, from which a software tool has been developed.
This tool is now freely available to doctors globally and helps to predict the outcome for those affected by meningiomas, define appropriate treatments and ultimately reduce the harm caused by brain tumours.
A highlight: Our INSTINCT research programme is a collaborative network to beat aggressive childhood brain tumours.
The network, led by Professor Steve Clifford, Professor Chris Jones and Dr Darren Hargrave, brings together world-class researchers in genetics, biochemistry and drug discovery to understand some of the most lethal childhood brain tumours and translate this knowledge into the clinic. So far, the team have:
A highlight: Initiatives such as the Brain Race have catalysed progress towards finding new, effective treatments for brain tumours.
In collaboration with Resonance Philanthropies and the Center of Advancing Innovation (CAI), The Brain Race was an open innovation contest and opportunity for 15 start-up companies to launch promising to high-impact solutions to defeat brain tumours.
With access to CAI’s White House-accredited accelerator training programme, including technology commercialisation classes and expert advice, 124 teams were hosted and the 15 winners were announced in April 2020.
A highlight: Through activities such as campaigning for the ‘Pink Drink’ to be accessible throughout the UK, we have enhanced care and quality of life in meaningful and practical ways, ensuring that those affected receive the best treatment, irrespective of postcode.
For people with a high grade glioma, surgery is the major line of treatment. 5-AminoLevulinic Acid (5-ALA, or the ‘Pink Drink’) is a pink dye that helps neurosurgeons to achieve a higher percentage of successful tumour removal, which is associated with longer survival. With 5-ALA, the whole tumour is removed in 70.5% cases, up from around 30% without. With total removal of the tumour, recurrence is delayed and survival is significantly improved.
Previously, access to the Pink Drink depended on postcode, but as a result of our research and many years of campaigning, 5-ALA was rolled out across all 27 neurosurgery units in the UK in 2018, and recommended by NICE as part of their updated guidelines for brain tumours.