UK’s first national networked brain tumour tissue archive

Dr Kathreena Kurian, Head of the Brain Tumour Research Group [right] with Hannah Williams, Brain Tumour Bank South West (BRASH) Manager

Press release issued: 7 October 2014

A new tissue banking initiative, called the Brain Tumour Archive Network, that will unlock thousands of previously hard to access brain tumour samples for researchers throughout the UK has been announced today [Tuesday 7 October].

Creation of the network was 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, run by 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.

BRAIN UK is a collaboration between the University of Southampton, Plymouth Hospitals NHS Trust and the University of Bristol together with a network of 26 hospitals across the UK and without their assistance the network wouldn’t be able to operate. Input and support for the project have also been provided by the British Neuropathology Society, British Neuro-oncology Society, Brain Tumour Network, Medical Research Council and National Cancer Research Institute Brain Tumour Clinical Studies Group.

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

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

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

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

Helen Bulbeck, co-founder and Director of Services at brainstrust, said: “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.”

Sue Farrington Smith of Brain Tumour Research added: “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 per cent 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.”

All involved in the project believe that the work will result in more research, better results, and better outcomes for brain tumour patients.

Further information

Brain Tumours – facts and statistics from Brain Tumour Research:

1 in 50 people who die under the age of 60 die from a brain tumour (two per cent of all deaths under 60)
71 per cent of those that die of a brain tumour are under the age of 75 (compared to 47 per cent for all cancers)
More children and adults under 40 die of a brain tumour than from any other cancer
Brain tumours receive just one per cent of the national spend on cancer research
16,000 people each year are diagnosed with a brain tumour
Only 18.8 per cent of those diagnosed with a brain tumour survive beyond five years, compared with an average of 50 per cent across all cancers
Unlike most other cancers, incidences of diagnosis with and deaths from brain tumours are increasing (and are much more common now than in 1970)

About the Brain Tumour Research Group

The Brain Tumour Research Group, part of the University of Bristol’s Institute of Clinical Neurosciences based at Southmead Hospital, aims to fully understand each individual’s tumour according to what is driving the abnormal growth of that specific tumour. Then surgery and a range of therapies can be tailored to the individual, providing a personalised medicine approach. We collaborate with a range of groups including Brain Tumour research charities, neuro-oncologists, neurosurgeons, neurologists and Bristol Genetics Laboratory. We are proud to have patient representation on our Brain Tumour Bank committee.

The Brain Tumour Research Group is co-located with the Brain Tumour Bank South West (BRASH) in North Bristol Trust.

About brainstrust

There are at least 55,000 people living with and beyond a brain tumour diagnosis in the UK. brainstrust was founded in 2006. The Charityhelps brain tumour patients and carers get back on top of things following a brain tumour diagnosis. It gives everyone diagnosed with a brain tumour access to the resources that will put them back in control. Its coaching based relationship with brain tumour patients and carers enables these people to develop their own resilience and to utilise brain tumour support resources to their full potential.

About Brain Tumour Research

Brain Tumour Research was launched in April 2009 to raise the awareness of and funding for scientific research into brain tumours and improve outcomes for brain tumour patients.

About Sophie’s Wish

Sophie’s Wish, based in Sheffield, was formed by family and friends of Sophie Burchill, to increase brain tumour awareness and research.

About Charlie’s Challenge

Charlie’s Challenge was established in 1993 shortly after 20-month-old Charlie Boutwood was diagnosed with a malignant brain tumour. He now lives life to the full and his remarkable recovery serves as an inspiration to find a cure. Over the last 20 years, the charity has been funding paediatric brain tumour research projects around the UK in its quest to improve treatments.