The brain tumour databank launches today. This groundbreaking project will revolutionise the way brain tumour data is used worldwide
The databank will allow those affected by a brain tumour to upload real-time information about their diagnosis, the treatment they receive and the impact it has on both their tumour and quality of life.
It will also collect clinical and medical data from patients' NHS trusts, with the appropriate consent.
The data will be made freely available in a managed way to clinicians and scientists around the world in order to drive forward global research into brain tumours.
Patients will also be able to access the databank so they can benefit from others' knowledge and experience and make better-informed decisions about their treatment and care.
Our survey was completed by 270 people who have, or have had, a brain tumour. Of those, 97% (262 respondents) agreed with the statement: “I would be willing to give my medical and health data to the databank to help improve brain tumour treatment and care."
Asked to explain their motivation, almost 88% (230 people) said they would do it “to improve outcomes and help others with the disease now and in the future, even if I get no benefit", while 8% (21 people) said they would do it for the improvements it could bring to their own care, treatment and quality of life.
Of those who were willing to share their data, the vast majority (almost 95%) said they would not be put off even if their tumour type was so rare that they could potentially be identified by the information they provided.
An even higher proportion (98.5%) said they would share information even though they understood that data breaches might happen in spite of the best security precautions.
The Brain Tumour Charity is currently developing its databank, the front end of which will comprise an interactive 'app' for patients and their carers to input personal data.
Professor Keyoumars Ashkan, professor of neurosurgery at King's College Hospital in London, said: “The global data bank initiative by The Brain Tumour Charity will provide an invaluable resource for shared information and knowledge amongst clinicians and patients across the world, to accelerate research and progress, to meet the needs of our patients and ultimately defeat this most difficult of diseases."
Dr Paul Brennan, senior clinical lecturer in neurosurgery at the University of Edinburgh, described the data bank as 'game-changing."
He said: “With this project, researchers will for the first time have access to large amounts of data from lots of patients.
“This is game-changing for research into brain tumours, permitting researchers to ask questions and test hypotheses on a database that is more representative of the 'real-world' than ever before.
“The answers and insights generated will hopefully propel forward our search for new and effective treatments."
Ben Pullen, husband of Sarah Pullen author of the recently published “A Mighty Boy", said: “Our son, Silas, was diagnosed aged 10 with a high grade glioma in August 2012. He was a happy, sporty, bright boy who maintained his humour and courage throughout the months that followed fighting this horrific disease.
“As a parent, you're willing to try anything to make your child better.
“If we had been able to use the databank to find out what other parents were doing to help their child suffering from the same tumour, we would have felt less alone."
Find out more here