Brain tumour databank launches with potential to be ‘game-changing’

A brain tumour databank has been launched by The Brain Tumour Charity – this will change the way brain tumour data is used worldwide.

The databank 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. It will also collect clinical and medical data from patients' NHS trusts, with the appropriate consent. The data will be made available to clinicians and scientists around the world to drive forward global research into brain tumours. Patients will also be able to access the databank so they can benefit from others' knowledge and experience and make better-informed decisions about their treatment and care. The Brain Tumour Charity is currently developing its databank, the front end of which will comprise an interactive 'app' for patients and their carers to input personal data. Dr Paul Brennan, senior clinical lecturer in neurosurgery at the University of Edinburgh, said: “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." Ben Pullen, husband of Sarah Pullen, author of the recently published A Mighty Boy, said: “Our son, Silas, was diagnosed aged 10 with a high grade glioma in August 2012. He was a happy, sporty, bright boy who maintained his humour and courage throughout the months that followed fighting this horrific disease. “As a parent, you're willing to try anything to make your child better. “If we had been able to use the databank to find out what other parents were doing to help their child suffering from the same tumour, we would have felt less alone."
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