In Campaign News

 

Save lives – be a brain tumour tissue donor

Brain tumour tissue is removed everyday by surgeons but very few people know they can donate brain tumour tissue to research. A new campaign launched today [Tuesday 24 February] at the University of Bristol led by leading medical researchers and charity, brainstrust seeks to raise awareness for patients and healthcare professionals about donating brain tumour tissue and helping researchers find a cure for this disease. 

 

 

Just one third of surgical patients offered opportunity to consent

A recent national survey by North Bristol NHS Trust, BRAIN UK and brainstrust indicated that only 30 per cent of brain tumour patients are offered the opportunity to consent for their brain tumour tissue to be used in research. Yet a recent poll by brainstrust suggested that over 90 per cent of patients would be keen for their tissue to be used.

 

Over 55,000 people in the UK are living with a brain tumour, 4,750 individuals are diagnosed with brain cancer every year and a further 4,500 are diagnosed with non-invasive tumours of the central nervous system.

 

However, many people are unaware that researchers do not have enough tissue to carry out their research and this is slowing down their work. By patients giving their consent, medical researchers will be able to use the donated brain tumour tissue for research into better treatments and to help find a cure for brain cancer.

 

The Brain Tumour Tissue Campaign will close the gap by addressing the following issues: 

 

  • Increasing patient awareness around donating brain tumour tissue;
  • Ensuring healthcare professionals understand the processes involved;
  • Helping centres engage in the tissue banking network.

 

The public can help improve brain tumour research

Dr Helen Bulbeck, Director of Policy and Services at brainstrust, added: “There is a fantastic opportunity here for the brain tumour patient community to drive significant improvements in brain tumour research simply by starting a conversation about tissue donation with their consultants. This is a positive campaign: the team driving this work is looking to support the clinical community in taking the simple steps required to improve consent rates, which will in turn help us better understand and manage this devastating disease more effectively.”

 

Dr Kathreena Kurian, Campaign Champion, Head of the Brain Tumour Research Group and Senior Clinical Lecture in the School of Clinical Sciences at the University of Bristol and a member of the BRAIN UK committee, said: “This project is an excellent opportunity to let the public know how they can support medical researchers and help fight brain tumours.

“By giving consent for tumour tissue removed at operation to be used for research the public can help researchers combat this devastating disease to benefit future generations of brain tumour patients.”

 

Professor James Nicoll, Director of BRAIN UK, said: “I am delighted that brainstrust and Dr Kurian are leading this important campaign to encourage people with brain tumours to donate samples for research.  This initiative fits very well with BRAIN UK which is a network of the hospitals that cares for patients with brain diseases, providing tissue to researchers.  We look forward to working together with Dr Kurian and brainstrust in order to support research leading to better understanding and treatment of these difficult conditions.”

 

Dr Suzy Lishman, President of the Royal College of Pathologists, added: “Increased tissue donation would empower patients, improve disease management and benefit future research.”

 

 

Join The Brain Tumour Tissue Campaign today

To join The Brain Tumour Tissue Campaign, all you need to do is read this page, then start a simple conversation. Click here to find out more.

 

Start the conversation - The Brain Tumour Tissue Campaign 

Brain Tumour Tissue Banking

Last autumn [October 2014] a new tissue banking initiative was announced called the Brain Tumour Archive Network.

The new network, or tissue bank, links 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. 

Creation of the network was led by brainstrust and BRAIN UK supported by a wider group of brain tumour charities including Charlie’s Challenge, Brain Tumour Research and umbrella group Sophie’s Wish.

You can read more about this initiative here. 

 

 

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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