In Research News

A new collaboration announced today gives unprecedented access to over 400,000 brain tumour tissue samples for research.

 

This initiative, called the Brain Tumour Archive Network, will unlock thousands of previously hard to access brain tumour samples for researchers throughout the UK.

brain tumour tissue bank, slide showing cancerous cells
Helping the clinical community to access more brain tumours for more research

Creation of the network is being led by brainstrust and supported by a wider group of brain tumour charities including Charlie’s Challenge, Brain Tumour Research and umbrella group Sophie’s Wish. BRAIN UK, operating at the University of Southampton, will link existing archives of brain tumour tissue in a virtual network so that researchers can gain access to unprecedented levels of tissue to support their much needed research into better treatments and a cure for brain cancer.

An exciting collaboration between Brain Tumour Charities, Societies, Universities and 27 Hospitals

BRAIN UK is run as a collaboration between representatives from the University of Southampton, Plymouth Hospitals NHS Trust and Bristol University and a network of 27 hospitals across the UK, without whose assistance the network couldn’t operate. The British Neuropathology Society, British Neuro-oncology Society, Brain Tumour Network, Medical Research Council and National Cancer Research Institute Brain Tumour Clinical Studies Group have provided input into and support for the project.

There is a huge hitherto unmet scientific and clinical need for brain tumour tissue, and with the stratified medicine agenda growing, the demand for samples with better quality background information grows, making the timing of this project perfect.

 

James Nicoll, Director of Brain UK and Professor of Neuropathology at the University of Southampton, comments: “I am delighted that we are able to provide this new resource for brain tumour research. We need to understand brain tumours better – how they arise and how they grow – so that we can learn to treat them better. BRAIN UK can now provide researchers with access to unprecedented numbers of brain tumour samples. This can only be done with the collaboration of our colleagues in Neuropathology departments throughout the UK and thanks to funding from the charities brainstrust and Brain Tumour Research and the Medical Research Council.”

 

Willie Stewart, Consultant Neuropathologist at Southern General, Glasgow, says: “One problem researchers in this field continually meet is a lack of tumour tissue for high quality research, yet there are vast resources of material in diagnostic laboratories throughout the country. This project paves the way for this invaluable material to be accessed to support high quality research projects.”

Networked approach could unlock nearly half a million samples for research

Brain tumour tissue is currently incredibly difficult for researchers to access, as many types of tumour are rare.

However, a review of current NHS archive holdings, dating back to the 1970s, revealed that a networked approach would make in excess of 400,000 stored samples potentially available to research. The Brain Tumour Archive Network will provide the interface that is needed between researchers and brain tumour tissue stored in NHS hospitals, giving easy access to the right tissue, in sufficiently large numbers with appropriate ethical approval already in place. It will support a diverse range of brain tumour research projects and change the face of neuro-oncology research.

Not one of us is as smart as all of us 

Helen Bulbeck, co-founder and Director of Services and Policy here at brainstrust says: “This is an exciting project. The Brain Tumour Archive Network is an initiative where tissue samples provided by patients from across the UK can be accessed through one central resource, then made available to scientists to study how and why brain cancer develops and spreads, and to devise the best possible treatments. We beleive that this project is testament to what can happen when Charities work together, with the clinical and research community. Not one of us is as smart as all of us.”

 

Sue Farrington Smith, Chief Executive of Brain Tumour Research says: “Brain tumours are the biggest cancer killer of children, and more children and young adults die from this disease than from any other cancer; in addition up to 40% of other cancers spread to the brain, yet research into brain tumours remains underfunded and under resourced. For years access to tissue has been the issue for researchers, and we’re delighted to be working with brainstrust and everyone else involved to help solve this problem.”

 

All involved in the project believe that the work will result in more research, better results, and better outcomes for brain tumour patients. If you want to find out more, or support this project please contact us on 01983 292405 or email hello@brainstrust.org.uk

brain tumour scans 

 

 

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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