Charity launches data-sharing project in quest for brain tumour cure

Pioneering web-app will help patients and researchers

Austin Clark | 11th Jan 18

The Brain Tumour Charity has today launched 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.

The Brain Tumour Charity is now inviting patients to register their interest in BRIAN at their 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 (pictured), 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.”

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.”

A survey conducted last year by The Brain Tumour Charity’s 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.