The Brain Tumour Data Accelerator
How our new project with Imperial College London aims to accelerate a cure through linked data.
Short Summary
Of more than £700m spent on cancer research each year, less than 3% is spent on brain tumours. This is largely because it’s difficult to gather the data needed to make progress. But, our new project – The Brain Tumour Data Accelerator – aims to change this.
On this page:
Click the links above to find out more about this exciting study.
Complete the survey
The below survey has been designed to help us understand more about what concerns people living with brain tumours or their loved ones may have with data sharing, so that we can address these appropriately ahead of going live with the project.
The BDTA Team
See our current team members working on the study.
Contact Us
If you would like more information or have a question about this project, please email research@thebraintumourcharity.org
Purpose of the Study
The Brain Tumour Charity believes that fighting brain tumours on all fronts through research, awareness and support is the only way to save lives, reduce long-term disabilities and help everyone with a brain tumour and their families.
Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours. Over £700m is spent on cancer research in the UK every year, yet less than 3% is spent on brain tumours, mainly because it is difficult to gather the large amount of data needed to make progress.
That’s why we are working with researchers from Imperial College London to find ways to improve the quality of life of people living with brain tumours and find cures. The Brain Tumour Data Accelerator (BTDA) project is one way we are doing this. It aims to collect linked and anonymised data from at least 1000 patients from selected centres treating brain tumours.
Linked data means we ask centres to combine the different forms of data connected to a patient, e.g. tumour types, scans, treatment options, ethnicity etc… so that we can get an overview of what that individual’s medical journey has been.
Having this linked dataset means researchers are able to look for patterns and trends in the data to accelerate a cure and improve the quality of life for those living with a brain tumour.
How the study will be conducted
The research team will collate data from various centres across the UK. This is a long term project, but to ensure that it is carried out efficiently, the team will start with data from two centres initially and then slowly incorporate others.
Each centre will link the data for their patients. This data is then anonymised and sent to the team, who will make it available in one safe and secure portal available for researchers, including academics and life science industry* to access. Researchers log into the platform using multifactor authentication (an electronic authentication method in which a user is granted access to a system only after successfully presenting two or more pieces of evidence to an authentication mechanism, e.g. phone or email address). The BTDA project team will provide researchers with examples of how the data should be used to ensure it is understood and used securely.
Anonymising this linked data means patients remain unidentifiable, but researchers can still gain valuable insight into any patterns or trends occurring in patients with similar tumours or following similar pathways.
The BTDA project team are not responsible for gaining consent to this data due to it being anonymised by the time it reaches the team – this lies directly with the centres. If a person wishes to have their data removed from the database, they must contact their centre directly, who will then inform us what data needs to be removed.
The BTDA Team
Participating Centres
Dr. Matthew Williams: Consultant Clinical Oncologist, Imperial College London
*The life sciences industry comprises companies operating in the research, development and manufacturing of pharmaceuticals, biotechnology-based food and medicines, medical devices, biomedical technologies, nutraceuticals, cosmeceuticals, food processing, and other products that improve the lives of organisms