Designed, led and enabled by patients, the brain tumour databank will collect and store medical and clinical data, and combine it with patient reported quality of life information.
This pioneering project will enable patients to make better-informed decisions about their own treatment and care, and help clinicians and scientists to accelerate research into brain tumours. It aims to radically transform the way brain tumour data is used worldwide.
Where will the brain tumour data come from?
Clinical and medical data will be collected from patients' NHS trusts, Public Health England and NHS Digital, with the appropriate consent. Patients will also be able to upload real-time information about their diagnosis, their treatment (both prescribed and non-prescribed) and the impact it has on their quality of life.
97%* of those with a brain tumour said they'd be happy to share their medical data to help accelerate research. *Results from a survey we conducted across 270 patients in June 2017
What will happen to the data?
The data will be collected, stored and accessed via an open but managed process governed by an independent, patient-led Advisory Board.
So what's next?
We are working hard to develop our databank, the front end of which will have an interactive 'app' for patients and their carers to input personal data. If you would like to register your interest in sharing your data in the future please add your details. As soon as the databank is live, we'll be in touch.