Clinical Research: putting patients at the centre

People living with a brain tumour should come first. This is a core value for us, and it’s what sets us apart. We do our own research, which always starts with listening to what our community needs, and then we use this as a driver for change.

We don’t think that researchers should be concentrating on things that don’t matter to you. And we know what matters to you. A good quality of life, for instance, matters to you.

On this page you will find:

Ensuring the voice of patients is heard in research

We know that there is disconnect in the epidemiology (how and why a disease happens) of disease (clinicians) and epidemiology of healthcare (patients). Researchers tend to focus on progression free survival and overall survival; patients and carers focus on the quality of life issues like function and symptom relief. It’s the clinician’s role to explore and share what is possible and the patient’s role to explore and share their preferences and what they value. So we work with our community to bridge this gap.

We share agendas, represent patient voice and look for solutions.

Helping clinicians put patients at the centre of research

Clinical trials

We know that our community wants to engage in research. We know too that when patients see a clinical trial as important they are more likely to participate. And we know that when patients and carers are involved in trial design then the research has patient relevance, asks the right question and accruals to the trial are better. We have produced a guide for clinicians on how and when they can involve patients in clinical trials. We also run workshops for clinicians on how to involve patients in trials and how to write lay summaries.

Just like in all of our work, we’re committed to representing the brain cancer community voice in trials too. Through our presence on national bodies such as the NCRI Brain and CNS Clinical Studies Group, and the Commissioning Reference Group, we are able to keep ahead of open trials and feed this information into our brain tumour hub.  We are also co-applicants with clinicians in trials which are exploring new treatments and quality of life. This means that we can keep ahead of the curve and know what is coming up so that we can share it with you, our community.

Growing an effective clinical community

We’re also improving patient outcomes by facilitating effective collaboration between clinicians who work in different specialties. To do this we have grown an enthusiastic clinical community that is really engaged with areas such as the neuro-rehabilitation and psychological agenda.

To find out more please email

If there’s one thing that researchers need to find a cure for brain tumours, it’s a sample of your brain tumour. Ask about tissue donation today.

Our own research, driven by the needs of patients

Have a look at some of the posters below, which we have presented at international and national conferences.

tissue consent

A lack of brain tumour tissue hampers research progress
Brain tumour tissue can be hard to access so brainstrust has been working with clinicians to unlock this resource.

jla priorities

Top 10 priorities for research in brain cancer
The brain tumour community has worked collaboratively to identify the Top 10 priorities for clinical research.

brainstrust pin board

Share Aware Pinboard
The brainstrust community set out to give Brain Tumour Awareness some real meaning. We wanted to understand, then raise awareness of real patient and carer issues.

information portal

Patient Information Portal
Get involved for the best possible outcome: developing an information portal for brain tumour patients.

Campaigning to make clinical research the priority

Alongside basic science research not always having an impact upon the lives of patients, there are other reasons why we want to focus our attention on effective clinical research. Other leading charities, like CRUK and the MRC, fund basic science research and are currently investing in brain cancer more so than other cancers. Why would we put all our efforts into this type of research when it’s already being done and might not deliver results anyway? We’d be back at square one.

The other reason is controversial. We (along with some clinicians) don’t think you can find a cure for brain cancer, or even for any cancer.  But what we can find is a way where people living with a brain tumour do so for a very long time, AND with a good quality of life – an exceptional quality of life and one that will prolong survival.

If we stopped looking for a cure and just focused on achieving a good quality of life for a long time as a goal, we’d win so much more ground.

How you can help us put patients at the centre of research

Join brainstrust’s campaign for better brain tumour research by:

Together we can ensure that research is focusing on the things that matter to you.

Latest research news

14th April 2015 – Launch of our new report – Quality of life: what the brain cancer community needs. Read about how we’re making changes to the delivery of neuro-rehabilitation.

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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:


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


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.


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


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

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