Brain tumour data: Statistics that shock, but can also bring hope

26 February 2026 | Blog, Brain Tumour Awareness Month, Campaigning and research, Collaborations, News

When we tell people that brain tumours are the biggest cancer killer of the under 40s, their first reaction is often shock or disbelief. What’s the evidence for this and where do we get our figures from?

Health data has the potential to transform our understanding of brain tumours. It can reveal patterns, guide how we use resources, improve services and shape research. However, in this field, data often raises as many questions as it answers.

To address this, the four main charities dedicated to research into brain tumours and support for those affected have come together to review the use of data across our platforms. Brain Tumour Support, Brain Tumour Research, The Brain Tumour Charity and brainstrust – the brain cancer people want to ensure that the information we provide to communities is accurate, aligned and up to date. Here, we also want to highlight the challenges we face in interpreting this data.

What are the challenges with brain tumour data?

The World Health Organisation has classified more than 100 different types of brain tumour. Given such a large and diverse set of tumours, some of which are incredibly rare, the way they are grouped for analysis can vary significantly between institutions and reporting organisations and may change with new scientific discoveries. These groupings can also sometimes lack the detail needed to reflect actual patient experiences. So, when we see “brain tumour” in a dataset, it might mean very different things depending on where it came from.

The term “brain tumour” is also used more broadly to include tumours in other parts of the central nervous system, such as the spinal cord, meninges and cranial nerves.
The language used can also carry different meanings depending on the audience. Terms like “brain cancer” and “brain tumour” may seem interchangeable, but they hold distinct definitions for clinicians and researchers, which are therefore important to understand. The term “brain tumour” covers both cancerous and non-cancerous tumours. So, it is essential that statistics clearly indicate whether they refer to brain tumours or brain cancer.

It is also important to understand the difference between primary and secondary brain tumours. Primary brain tumours start in the brain itself, while secondary (or metastatic) brain tumours begin elsewhere in the body and spread to the brain. This distinction matters because they often behave differently, require different treatments and are tracked separately in data systems. The number of new brain metastases diagnosed each year is not reported in official statistics, and the rates cited in the literature vary and are thought to be underestimates.

Why sharing the same data matters

In the face of these challenges, establishing a shared dataset across brain tumour charities offers significant benefits, including:

• Enabling meaningful comparison across organisations, regions and time periods to spot trends and disparities in care and outcomes
• Amplifying patient voices by systematically capturing the experiences of people living with a brain tumour and their unmet needs
• Supporting advocacy efforts with evidence-based insights into gaps in services and research
• Identifying research priorities by revealing where knowledge and support are most needed
• Improving collaboration between charities so that our spokespeople and champions use a shared language and framework
• Tracking progress over time in patient support, survival rates and quality of care
• Supporting resource planning by understanding the prevalence and needs of different patient groups

The core data

The four charities have agreed on key data to share with the community to ensure the information we all use is consistent and accurate. Although specific wording may vary between individual charities, the data remains the same:

• Brain tumours are the biggest cancer killer of children and young adults under 40 in the UK (1)
• Around 13,000 people in the UK are diagnosed with a primary brain tumour every year (2)
• In England, 12.9% of adults diagnosed with brain cancer survive five years or more (3) compared to an average across all cancers of 56% (4)
• Brain cancer reduces life expectancy by an average of 27 years (5)
• More than 5,400 people lose their lives to a brain tumour each year (6)
• Brain cancer clinical trials have the lowest recruitment levels of all cancer clinical trials (7)

The figures we present are a starting point. As a collective, we will continue working together to review and refine our data usage, ensuring it remains up to date and meets the needs of our community.

It is important to remember that each person is unique, and their individual journey is not necessarily represented by the general figures and averages provided by statistics.

References

1. Institute for Health Metrics and Evaluation (IHME). GBD Results 2023: ages 0-39 years. Seattle, WA: IHME, University of Washington, 2025. Available at: https://vizhub.healthdata.org/gbd-results/. (Accessed Jan 2026)
2. Cancer Research UK. Brain, other CNS and intracranial tumours incidence statistics (2017-2019). Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/brain-other-cns-and-intracranial-tumours (Accessed Jan 2026)
3. NHS England. Adult cancer survival data tables for 2016 to 2020 diagnoses (2023). Available at: https://digital.nhs.uk/data-and-information/publications/statistical/cancer-survival-in-england/cancers-diagnosed-2016-to-2020-followed-up-to-2021 (Accessed Jan 2026)
4. NHS England. 5-year index of cancer survival (%) for people diagnosed in 2016, Cancer survival: Index for sub-Integrated Care Boards, 2005 to 2020 (2023). Available at: https://digital.nhs.uk/data-and-information/publications/statistical/cancer-survival-in-england/index-for-sub-integrated-care-boards-2005-to-2020 (Accessed Sep 2025)
5. Institute for Health Metrics and Evaluation (IHME). GBD Results 2023. Seattle, WA: IHME, University of Washington, 2025. Available at: https://vizhub.healthdata.org/gbd-results/ (Accessed Jan 2026)
6. Cancer Research UK. Brain, other CNS and intracranial tumours mortality statistics (2021-2013). Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/brain-other-cns-and-intracranial-tumours/mortality (Accessed Jan 2026)
7. The Institute of Cancer Research. Clinical trials in cancer (2021). Available at: https://www.icr.ac.uk/docs/default-source/corporate-docs–annual-reports/icr-report-clinical-trials-in-cancer.pdf?sfvrsn=d6a98401_2 (Accessed Oct 2025)