In Brain Tumour Data, Charity News, Press Releases

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.

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 Research, The Brain Tumour Charity, brainstrust – the brain cancer people and Brain Tumour Support want to ensure that the information we provide to our community 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 UK1
  • Around 13,000 people in the UK are diagnosed with a primary brain tumour every year2
  • In England, 12.9% of adults diagnosed with brain cancer survive five years or more3 compared to an average across all cancers of 56%4
  • Brain cancer reduces life expectancy by an average of 27 years5
  • More than 5,400 people lose their lives to a brain tumour each year6
  • Brain cancer clinical trials have the lowest recruitment levels of all cancer clinical trials7

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)
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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php