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  • About
    brainstrust
    • Our Story
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  • Have I got a
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  • I have a
    brain tumour
    • Help me understand treatment and care
      • Patient guides
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        • Molecular analysis
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      • Grief and bereavement
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        • Counselling / Hypnotherapy
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        • Close
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Events

Ipswich Half Marathon
By Ashley Hawkins
In Events, Fundraising Events
Posted 30th April 2025

Ipswich Half Marathon

Join team brainstrust’s mission to help all people with a brain tumour at the Ipswich Half. The race will start and finish at Portman Road Stadium – home to Ipswich Town FC. You will [...]

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Living with metastatic brain cancer? – Thurs 29th May 13.30pm
By David Lavelle
In Events, Patient & Carer Events
Posted 28th April 2025

Living with metastatic brain cancer? – Thurs 29th May 13.30pm

Living with metastatic brain cancer? Welcome to our online event where we come together to share stories, offer support, and provide resources for those living with metastatic brain cancer. Join [...]

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Let’s get together in Lancaster! – Thurs 1st May 13.30pm
By David Lavelle
In Events, Past Events, Patient & Carer Events
Posted 28th April 2025

Let’s get together in Lancaster! – Thurs 1st May 13.30pm

Location; Health Innovation Campus Bailrigg LA1 4YW We’d love to catch up with you in Lancaster. Everyone living with a brain tumour is welcome, whether you are a patient or a caregiver. [...]

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Your space. Your voice. Time to write! – Wed, 7 May, 11:30am
By David Lavelle
In Events, Past Events, Patient & Carer Events
Posted 23rd April 2025

Your space. Your voice. Time to write! – Wed, 7 May, 11:30am

  ‘Your space, your voice’ writing workshops From this May we’d love you to take part in our writing workshops to gain confidence sharing your individual story. ‘Your space, your [...]

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Calmness and Confidence; hypnotherapy workshop – Weds 28th May 7.00pm
By David Lavelle
In Events, Patient & Carer Events
Posted 17th April 2025

Calmness and Confidence; hypnotherapy workshop – Weds 28th May 7.00pm

This workshop will enable you to harness the powers of neuroscience-informed techniques to anchor you in a state of serene self-assurance. Leverage the techniques and insights gained from [...]

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Colloid Cyst – Fri 23rd May 1.00pm
By David Lavelle
In Events, Patient & Carer Events
Posted 17th April 2025

Colloid Cyst – Fri 23rd May 1.00pm

We know that having a colloid cyst diagnosis can feel isolating and information is often hard to find. Come along to this relaxed virtual meetup to connect with others that really get it. [...]

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Managing Fatigue Workshop – Thurs 22nd May 2.00pm
By David Lavelle
In Events, Patient & Carer Events
Posted 17th April 2025

Managing Fatigue Workshop – Thurs 22nd May 2.00pm

This interactive workshop will help you to understand fatigue and how it is different for people living with a brain tumour. You will be encouraged to share your experiences on how fatigue is [...]

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Whilst I Wait Hypnotherapy Workshop – Weds 21st May 2.00pm
By David Lavelle
In Events, Patient & Carer Events
Posted 17th April 2025

Whilst I Wait Hypnotherapy Workshop – Weds 21st May 2.00pm

Waiting is an inevitable part of the journey with a brain tumour, but it’s more than just passing time. It’s an opportunity to rebuild your identity, confidently assert yourself, and [...]

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Meningioma Matters – Thurs 15th May 1.00pm
By David Lavelle
In Events, Patient & Carer Events
Posted 17th April 2025

Meningioma Matters – Thurs 15th May 1.00pm

We know how hard it is living with a meningioma, whether you’re a patient or a caregiver. We’d love to hear how you are getting on, what you’re struggling with. Conversation is [...]

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brainstrust Bereavement Community – Weds 14th May 7.00pm
By David Lavelle
In Events, Patient & Carer Events
Posted 17th April 2025

brainstrust Bereavement Community – Weds 14th May 7.00pm

  People who have been caregivers for a long time are left wondering: ‘What will I do now? I’ve forgotten how to take care of myself or where to go for help’. This is often easier said than [...]

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Recent Posts
  • Tracey reaches half way!
    Tracey reaches half way!
    1st May 2025
  • Ipswich Half Marathon
    Ipswich Half Marathon
    30th April 2025
  • Living with metastatic brain cancer? – Thurs 29th May 13.30pm
    Living with metastatic brain cancer? – Thurs 29th May 13.30pm
    28th April 2025
brainstrust’s impact last year

brainstrust impact 2022-23Our vision is for everyone with a brain tumour to feel less afraid, less alone and more in control.

Last year (2023-2024):

4,689 people contacted our team of support specialists for help.

1,514 of these people accessed our support for the first time.

453 people received a Brain Box

125,405 people accessed our online information and support, they downloaded 9384 resources.

NEWS
  • Tracey reaches half way!
    Tracey reaches half way!
    1st May 2025
  • brainstrust resources reaching across the world
    brainstrust resources reaching across the world
    17th March 2025
  • Lark Rise Bike Ride 2025
    Lark Rise Bike Ride 2025
    24th February 2025
  • brainstrust supports One Cancer Voice in call for earlier cancer treatment
    brainstrust supports One Cancer Voice in call for earlier cancer treatment
    13th February 2025
  • Nikki’s moving brain tumour story.
    Nikki’s moving brain tumour story.
    3rd February 2025
Stay in touch
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© 2025 brainstrust | Contact us | Privacy

Registered with the Charity Commission for England and Wales as Charity No. 1114634 and with the Office of the Scottish Charity Regulator as Charity No. SC044642

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