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Joining the UK Health Data Research Alliance

We’re delighted to announce that The Brain Tumour Charity has become one of the first charities to join the UK Health Data Research Alliance to improve the quality of data and make it easily accessible for a more innovative and dynamic UK-wide health and care system.

Looking forward to forging new partnership so data can be used for vital research faster

Along with seven other leading health organisations also going into partnership today – including three of the UK’s largest NHS trusts – Barts Health, University Hospitals Birmingham and Nottingham University Hospitals and the Cystic Fibrosis Trust – we will work together to accelerate progress in medicine and health.

Established in February 2019 by Health Data Research UK with 10 founding members, the Alliance will help researchers to address health challenges through better access to data.

Sarah Lindsell, our chief executive, said: “We are very excited and honoured to be one of the first charities to join the Alliance.

“This partnership complements our pioneering BRIAN data bank which collects and shares information about people’s diagnoses, tumour types, treatment, side effects and impact on their quality of life.

“Sharing knowledge and experiences will empower people to make better-informed decisions about their treatment and care.

“BRIAN will also make this data – whether direct from patients or from their NHS records – available to researchers.

“This combined invaluable insight will bring us nearer to finding a cure and saving more lives.

“We look forward to forging a partnership with the Alliance to improve the quality of data and make it easily accessible.

“By pooling expertise of members to standardise how data is responsibly collected and shared, it will be used for vital research faster, with patients at the heart of everything we do.”

Professor Andrew Morris, Director of Health Data Research UK and Chair of the Alliance Board, said: “We warmly welcome The Brain Tumour Charity and other new members.

“Each brings high value datasets, as well as new approaches to developing tools and techniques, to use diverse health data at scale to make improvements to people’s lives through research.”