The move follows a survey carried out by the charity last year which found that almost all of those diagnosed with a brain tumour would be willing to share data about their diagnosis and subsequent treatment in order to help develop better treatments.
The data bank, dubbed 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. Patients will then be able to benefit from others’ knowledge and experience and make better-informed decisions about their own treatment and care.
The data, which will be made available to clinicians and scientists around the world, will also include clinical and medical data from gathered from NHS trusts, with patient consent.
The Brain Tumour Charity is now urging patients to register their interest in BRIAN at its website, and give the charity consent to access their medical records, with a view to launching the web-app later this year.
The charity's chief scientific officer Dr David Jenkinson 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, added: “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.”