Check SCREEN READER MODE to make this survey compatible with screen readers.
Brain Tumour Data Accelerator (BTDA) Research Project
You are being invited to take part in a research study sponsored by The Brain Tumour Charity and lead by researchers at Imperial College London. Before you decide to complete this survey, it is important for you to understand why the research is being done and what it will involve.
Please read the following information carefully and discuss it with others if you wish. For more information, please contact: research@thebraintumourcharity.org.uk
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 people affected by a brain tumour.
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.
The BTDA project aims to collect linked and anonymised data from at least 1000 patients from selected centres treating brain tumours.
How the study will be conducted
This is a phased long-term project, where we will collect data from two centres initially and then slowly incorporate more across the UK.
Each centre will link the data for their patients (which is anonymised) and send it to the BTDA team who will make it available in one safe and secure portal. Researchers* requesting access to the data will need to submit a form to the Charity’s Data Access Request Board who will decide if permission is granted.
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…
Anonymising this data means patients remain unidentifiable, but researchers still gain valuable insight into occurring patterns or trends in patients with similar tumours or following similar pathways. It means researchers can identify patterns and trends in the data to help people live longer and better.
The BTDA project team receives anonymised data and are not responsible for gaining consent to use data. If a person wishes to have their data removed, they must contact their centre directly, who will inform the BTDA team.
The below questions are designed to help us understand more about what concerns people affected by a brain tumour may have with data sharing, so that we can address these appropriately ahead of going live with the project.
*This includes academics and life science industry (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)
