How The Brain Tumour Charity's project, BRIAN, is leading a data revolution

Wednesday 10 October 2018

The Brain Tumour Charity has long been an advocate for creative and pioneering solutions to the complex problem of brain tumours

So when we began thinking about how valuable medical data could drive improvements in the treatment, diagnosis and outcomes of brain tumours, we hit upon a revolutionary project in the field of cancer.

And so the Brain tumouR Information and Analysis Network (BRIAN) began.

Currently for those with a brain tumour, there's no easy way of learning from others' experience and many are unaware of potentially beneficial clinical trials. Similarly, researchers struggle to access a large amount of quality data, so many projects don't get started, delaying vital progress. We believe BRIAN will change this.

Dr Darren Hargraves, Clinical Professor in Paediatric Neuro-oncology and Consultant Paediatric Oncologist at Great Ormond's Street Hospital, said,

“I know the desperate need that children and families have. I look after children with brain tumours every day and I've seen far too many lose their lives or families disrupted because of this disease. I also know, as a researcher, the power that data can have. So it's vital that this is easy to hand. And that's where BRIAN can make a real difference."

So what exactly is BRIAN?

BRIAN is a ground-breaking databank, the first of its kind in the UK, and the first databank for cancer in the world. And is more than just your conventional databank too. Not only will BRIAN securely collect and store medical records, but it will be backed up by patient-reported quality of life information. It will show – for the first time – the 'end-to-end' experience of someone with a brain tumour, so everyone can benefit from this critical information.

BRIAN will allow those affected by a brain tumour to make informed decisions based on the experiences of others, clinicians to identify and implement best practice, and researchers to access data to reach a cure sooner.

And we're proud to be behind this pioneering concept, driving it forward, and working with our community to make this game-changing idea a reality. We've sought the input, advice and feedback of those affected, their families and carers at every stage of BRIAN's conception and build so far.

Together, we've made incredible progress and are now working with both NHS Digital and Public Health England to acquire the relevant medical and clinical data to populate BRIAN.

And BRIAN is already making a major impact.

More than 500 people have already signed up to BRIAN, including the late Baroness Tessa Jowell. Furthermore, in September, we were honoured to win the prestigious and highly-esteemed Third Sector award for Charity of the Year. One of the reasons for this win? BRIAN! Our databank was praised as leading the way across the third sector for innovative data solutions and for being such a pioneering project.

We're pleased to get such recognition and to win awards for our achievements. But we're even more pleased with what it all represents: our success in making a positive impact for the brain tumour community, and on accelerating a cure for this disease.

But we're ambitious and we know BRIAN will not stop there.

We know BRIAN has the potential not only to improve life for those affected by brain tumours in the UK, but to transform outcomes for so many different cancers and other disease areas around the globe. By utilising and sharing valuable medical and clinical data in the same way BRIAN hopes to for brain tumours we hope to BRIAN will make an even larger and further reaching impact.

Data is already doing so much to change our lives, it has been for decades. So the next step, the most important step in the data revolution, will be to pick up the pace of progress for diseases across the world. And we're proud to be spearheading this movement.

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