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Save lives - be a brain tumour tissue donor

Press release issued: 24 February 2015

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

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.

Sixty-thousand 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 new 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.

Dr Kathreena Kurian, Campaign Champion, Head of the Brain Tumour Research Group and Senior Clinical Lecturer 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.”

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 are 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.”

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.”

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

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. 

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.

Further information

Campaign supporters:

The Brain Tumour Tissue Donation Campaign is supported by brainstrust, University of Bristol, North Bristol NHS Trust, Brain Tumour Research, International Brain Tumour Alliance and the Royal College of Pathologists.

Campaign patrons:

  • Stephen Venables, famous British mountaineer, whose elder son Ollie died eleven years ago after becoming ill with a brain tumour;
  • Dr Kathreena Kurian BSc, MD, MBBS, FRCPath (Neuro), Consultant Neuropathologist and Honorary Senior Lecturer at the University of Bristol and Southmead Hospital, Bristol;
  • Professor James Nicoll BSc MBChB MD FRCPath, Professor of Neuropathology and Honorary Consultant Neuropathologist at the University of Southampton;
  • Claire Bullimore, brain tumour patient advocate, author and founder of

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 brainstrust
There are at least 55,500 people living with and beyond a brain tumour diagnosis in the UK. brainstrust was founded in 2006. The Charity helps 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 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 NHS Trust.

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