Launching our data-sharing project in quest for brain tumour cure

Thursday 11 January 2018

Pioneering web-app will help patients and researchers

We are proud to announce the launch a unique global data-sharing project to boost progress towards more effective brain tumour treatments.

The Charity's new data bank, known as BRIAN, 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 be able to access the data bank so they can benefit from others' knowledge and experience and make better-informed decisions about their treatment and care.

Uniting our community

We are now inviting patients to register their interest in BRIAN at the website and give the charity consent to access their medical records, with a view to launching the web-app itself later this year.

Dr David Jenkinson, chief scientific officer for The Brain Tumour Charity, said: “Progress towards more effective brain tumour treatments has been too slow for too long.

“There is not enough information available to researchers and accessing what little there is can take years.

“We know that the vast majority of those affected by a brain tumour will do whatever they can to change that.

“BRIAN will radically change the landscape of research into brain tumours, allowing patients to make better-informed decisions on their treatment and care and accelerating the development of potential new treatments and diagnostic techniques."

Backed by experts

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."

Willingness to share

Louise Edwards, a project manager who was diagnosed with a brain tumour in 2011, welcomed the move to establish a patient data bank.

Ms Edwards, who was among the patient representatives advising The Brain Tumour Charity as it developed BRIAN, said: “The Brain Tumour Charity's data bank will help give patients access to the right information at the right time.

“In my case, I struggled to find out about the after-effects of brain tumour surgery.

“I had been warned I would be at risk of infection but when it actually happened, I found it very difficult to deal with - I had no practical advice on coping with it.

“If I had been able to use the data bank to find out how other patients were managing, I would have felt less alone."

Our survey, conducted last year, found that almost all of those diagnosed with a brain tumour would be willing to share information about their diagnosis and subsequent treatment in order to help develop better treatments.

Of 270 respondents to the survey, 97% (262 respondents) agreed with the statement: “I would be willing to give my medical and health data to the data bank 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.

Follow the link on our home page to get involved. United, we will make a difference.