Multi-million pound UK Biobank underway – Manchester area trailblazes revolutionary medical project

UK Biobank, a visionary medical project aimed at improving the prevention, diagnosis and treatment of cancer, heart disease, diabetes and many other serious conditions is launched this week after several years of meticulous planning.

Up to three thousand people living in the south Manchester area are being given the opportunity to trailblaze the project before it goes nationwide later this year.

They are being sent invitations to take part in the start-up phase of UK Biobank – a revolutionary research undertaking that will eventually recruit half a million volunteers aged 40 to 69.

The project – a UK world first – will gather, store and protect a vast bank of medical data and material that will allow researchers to study in depth, in decades to come, how the complex interplay of genes, lifestyle and environment affect our risk of disease. Because it will involve thousands of people who eventually go on to contract each particular disease UK Biobank will provide a uniquely rich resource that allows researchers to identify more reliably than ever before why some people develop a specific disease and others do not.

“Nothing like this has been attempted before in such fine detail on such a vast scale,” said Professor Rory Collins, UK Biobank’s Principal Investigator, who is also Professor of Medicine & Epidemiology at the University of Oxford. “It’s been known for a long time that the risk of getting a particular disease often involves a combination of environment, lifestyle, genes – and chance – but all studies to date have had limitations, which mean we still don’t have a clear picture of how these different elements interact. By being so large and detailed, UK Biobank will be able to study many different risk factors together, each of which may have only modest effects on the likelihood of getting some particular disease.”

Taking part will involve the first volunteers spending about an hour at an assessment centre in Altrincham, Cheshire, answering some questions, having some standard measurements taken and giving small blood and urine samples. They will also be asked to agree to allow their health to be followed by UK Biobank for many years directly through routine medical and other health-related records.

The objective of the initial phase of recruitment is to make sure all of the planned procedures go smoothly before the study gets underway nationwide later in the year, when around eight to 10 assessment centres will be running at any one time around the UK.

Sir Alan Langlands, the Chair of UK Biobank’s Board and previously Chief Executive of the NHS, said: “The NHS treats the largest single group of people anywhere in the world and it keeps detailed records from birth to death. From these records we can identify men and women to invite who are aged between 40 and 69. This age group includes many people who are at risk of developing a wide range of disabling and life-threatening conditions over the new few decades. So, following them through their health records will allow researchers to work out why some develop a particular disease, while others do not. This should help enormously in the development of new ways to prevent and treat disease.”

UK Biobank is a massive technological undertaking, involving specially designed automated systems for blood sample separation and for storage, retrieval and tracking of around 10 million biological samples, which must be kept at between -80°C and -200°C for several decades. When UK Biobank is running nationwide, this robotic system will need to handle samples taken from around 1,000 people every day.

Dr Tim Peakman, executive director of UK Biobank and in charge of running the first assessment centre in Altrincham, said: “This is a tremendously exciting project that holds out real hope for producing vital insights into some of the most distressing diseases of middle and old age. It has already taken several years of careful planning and it now needs two to three thousand people to help us with this initial start-up phase. Because of UK Biobank’s importance for improving health, we are optimistic that many local men and women will be keen to get it off to a flying start.”

GPs in the area have already been notified, and the first letters to potential participants have been sent out. These were accompanied by a detailed information booklet. Further information is available on request (and via a web site www.ukbiobank.ac.uk), with a freephone number that volunteers and GPs can ring to raise any queries with a study team member. No one is pressured into taking part, and participants can withdraw at any time if they change their minds. The first assessment centre is located in the centre of Altrincham, with appointments continuing into the evenings and at weekends, so that it is easy for lots of different people to attend.

“UK Biobank is a long-term project,” said Professor Collins, “so taking part will be a bit like being a blood donor – you probably won’t benefit, but others will. In this case it will be your children and grandchildren’s generation. We understand also that there may be questions or concerns about the security of the information and DNA samples. So, information booklets are being sent to everyone we invite and we have a freephone number that people can call to chat things through with a member of the study team. Participants and the public have been at the heart of UK Biobank all along the line. Every possible detail has been gone through with a fine-tooth comb – rigorous scientific assessment, review by an independent ethics and governance council, Data Protection Act compliance, stringent security measures to prevent unauthorised access to participant’s data — and this scrutiny will be ongoing.”

UK Biobank has been set up as a charity that will be the guardian of this precious database and sample collection. It involves collaboration between medical researchers from more than 20 UK Universities who have developed the study design. The £61m funding is being provided through the Department of Health, the Medical Research Council (MRC) and the Scottish Executive, and by the Wellcome Trust medical charity. Its aims are also strongly supported by other charities such as the British Heart Foundation and Cancer Research UK, as well as by the NHS.