Now the long-term follow-up of participants’ health through a wide range of different health record systems is underway. This additional information will strengthen UK Biobank as a major resource for health researchers.

Knowing what illnesses participants do (and do not) develop will allow scientists to compare a wide range of differences in genes, lifestyles and environmental exposures to identify causes and suggest new ways to tackle common illnesses of middle and old age.

Death

The automatic notification of deaths to UK Biobank is a priority. These data are already being received for England and Wales and data from Scotland will be available soon. It can take several months for this sensitive information to work through to UK Biobank records. This information is also useful in helping UK Biobank to avoid contacting people who have died recently (although due to delays, it may not always prevent this from happening).

Cancer

The UK has one of the most comprehensive cancer registration systems in the world. A system for regularly updating UK Biobank on participants with cancer will come into effect in 2012.

Admissions to hospital

In England, a national statistical ‘data warehouse’ – Hospital Episodes Statistics (HES) – contains over 200 million records about people’s stays in hospital. There are similar national systems in Scotland and Wales. Data on diagnoses made and the procedures carried out during hospital admissions in England, Scotland and Wales are expected to come online for UK Biobank in 2012.

Primary care records

These provide information about diagnoses, treatments (such as prescriptions) and previous histories and patterns of illnesses. Systems for linking to primary care (general practice) records are being developed for UK Biobank in Scotland and Wales. UK Biobank is also working with the NHS to pilot an exciting new scheme which will allow, for the first time, linkage to primary care records across England.

Other records

UK Biobank also plans to link to other health-related records systems (such as dental and occupational health records), and to disease registers (such as those for diabetes, heart disease and kidney disease) in order to extend the range of conditions that can be studied. UK Biobank is very special because it already has detailed information about participants collected at their initial (baseline) assessment. Collecting detailed information about the sorts of illnesses they develop and having the opportunity to find out more about their daily lives (such as the web-based diet questionnaire, asking participants to wear an accelerometer to monitor movement, and to undertake web tests to measure brain function) will help researchers assess poorly detected conditions such as decline in brain function and depression.

Adjudication of health outcomes

Experts are working with UK Biobank to confirm diagnoses and determine precise classifications of sub-types of disease, starting with cancers, diabetes, heart disease and stroke. This will considerably strengthen the research potential of the Resource.

Change of address

If you move, or change your email address, please do let us know. Information can be provided online by visiting the UK Biobank website or by calling the UK Biobank Participant Resource Centre on free phone 0800 0 276 276 (8am-7pm Monday-Saturday).

Web links

UK Association of Cancer Registries

Health Information Research Unit Wales

Health Informatics Centre Scotland

Hospital Episodes Statistics

General Practice Extraction Service (GPES)

UK Biobank Protocol

New inventions and discoveries continuously change the face of healthcare across the globe, medical experts were told at the BMJ Innovation Expo conference. Smallpox vaccination, penicillin, in vitro fertilisation, magnetic resonance imaging – the list is long.

But what is next, the medical community was asked. Six ideas were voted for at the BMJ Expo – including do-it-yourself spectacles, build your own toilets, social media and biobanking. A panel of experts debated which one was likely to make the biggest impact on healthcare by 2020.

You can view the UK Biobank presentation, given by Professor Rory Collins, UK Biobank’s Principal Investigator here, or click on the presentation below:

Roger Brownsword chairs the UK Biobank Ethics and Governance Council (EGC). He replaced Professor Graeme Laurie, who reached the end of his four-year term at the end of 2010.

The EGC was established in 2004 as an independent body to advise UK Biobank on rigorous standards of ethical, legal, and social consideration, as set out in the project’s Ethics and Governance Framework (EGF). The Council also reports publicly on the conformance of UK Biobank’s activities with the Framework and with the interests of participants and the public.

From September 2003 until his retirement in 2010, Roger Brownsword was Professor of Law at King’s College London. In 2001- 2002 he acted as a specialist adviser to the House of Lords’ Select Committee on Stem Cells and, more recently, to the House of Commons’ Science and Technology Committee for its report on hybrids and chimeras in 2007.

Professor Brownsword is an Honorary Professor in Law at the University of Sheffield and served as a member of the Nuffield Council on Bioethics from 2004 – 2010.

At the time of his appointment, Professor Roger Brownsword said: “The EGC has played a key role in building a robust and ethically sensitive governance framework for the operation of UK Biobank. As we enter a new and important phase of the research, it is vital that governance is geared to maintaining the trust and confidence of UK Biobank’s stakeholders, not least the trust and confidence of the 500,000 participants. I am looking forward to joining the EGC at this challenging time.”

• More about the Ethics & Governance Council
• Public consultations

Further information about the Ethics & Governance Council can be found at its website.

If you have had an email asking you to undertake the UK Biobank diet questionnaire now, you can log in here, though it is more straightforward to log in from the invitation email.

UK Biobank is asking participants who have provided their email addresses to undertake its online diet questionnaire.

During their assessment, participants gave UK Biobank a summary of their typical diet – but to understand how food intake varies and to maximise the nutritional information available, it is best to have several ‘snapshots’ from each participant.

The online questionnaire has been specially designed and is easy to use, so it only takes about 10-15 minutes to complete (more than 100,000 people have completed it so far).

The questionnaire asks about the food and drink participants consumed during the day before they completed it – even if this is not a typical day for them. Participants are encouraged to complete the questionnaire as soon as they receive their notification, although they are able to complete it later if necessary.

“We know that, for a proportion of people, what they ate yesterday will not be what they usually eat,” said Professor Rory Collins. But it is easier to remember what one ate yesterday and it avoids problems associated with people choosing a ‘typical’ diet that may not in reality be very typical at all.

The diet questionnaire has been sent out every 3-4 months to get multiple snapshots of the food and drink participants consume. Accurate recording by participants, repeated several times like this, allows UK Biobank to gain a fuller picture of their typical diet than would be obtained by either asking about a ‘typical’ diet, or by inference from just one day.

Combining the dietary information with the analyses of specific nutrients in blood, urine and saliva samples will refine the measurement of dietary intake further. This will help scientists to improve their understanding of the link between particular aspects of diet and diseases like particular types of cancer and heart disease.

The development of online systems like this will help UK Biobank gain further information to strengthen the Resource for health research. For instance, UK Biobank is making plans to assess previous occupations in more detail in this way. It may also be able to detect evidence of diseases (such as decline in brain function and depression) which are harder to identify through health records.

A £585,000 investment by the charity Leukaemia & Lymphoma Research in September 2011 will allow the collection of detailed genetic samples of every child diagnosed with the blood cancer in the UK. The Childhood Leukaemia Cell Bank is the first centralised childhood leukaemia bank of its kind in the world.  

Leukaemia & Lymphoma Research is the first charity to make use of the state of the art DNA and tissue storage facilities at the UK Biocentre in Manchester. The facility will coordinate the sampling, collection, processing and storage of tissue, cell and DNA samples taken from children diagnosed with leukaemia. Samples which have already been collected from children in previous clinical trials and stored in separate banks across the country will also be transferred to the new cell bank.  

Dr David Grant, Scientific Director at Leukaemia & Lymphoma Research, said: “This is the first time the UK will have a central resource that enables scientists to study the disease in all children with leukaemia. Cell banks are incredibly important and are vital to many research projects. The cell bank is paramount to improving our understanding of childhood leukaemia.”  

Leukaemia & Lymphoma Research have been investing in childhood leukaemia cell banking since 2003, as part of nationwide clinical trials for childhood acute lymphoblastic leukaemia.  

Cell banks have already proved essential in 18 high profile research projects, which have used over 5,000 DNA and cell samples. The new centralised bank in Manchester is expected to collect over 2,000 new samples each year from children diagnosed with leukaemia.  

Dr Tim Peakman, Executive Director at UK Biocentre, said: “This is a great partnership for UK Biocentre, working with Leukaemia & Lymphoma Research to provide an invaluable resource for scientists for years to come. This investment will contribute to the continued search for a cure for leukaemia.”

Find out more about UK Biocentre

His work has been in the establishment of large-scale studies of the causes, prevention and treatment of heart attacks, other vascular disease, and cancer. His research has helped save millions of lives around the world every year. For example, the studies that he has run have shown that “clot busting” treatments and “clot preventing” treatments (like aspirin) can halve the risk of death following a heart attack. He has also shown that the cholesterol-lowering “statin” drugs reduce the risk of heart attacks and  strokes in a much wider range of people than had been thought to benefit (including the elderly, women, people with diabetes  and those with below average cholesterol).

Rory qualified in medicine at St Thomas’s Hospital Medical School, University of London, in 1981 and obtained BSc in statistics from George Washington University, Washington DC in 1977 and MSc in statistics from the University of Oxford in 1983.

In 1985 he became co-director, with Professor Sir Richard Peto, of the University of Oxford’s Clinical Trial Service Unit & Epidemiological Studies Unit (CTSU). In 1996 he was appointed Professor of Medicine and Epidemiology at Oxford, supported by the British Heart Foundation. CTSU was awarded a Queen’s Anniversary Prize for Higher and Further Education in 2006 for its research contributions to public health.

Half a million people have joined UK Biobank, which includes the most detailed large-scale collection of data ever undertaken on blood pressure, lung function and grip strength, height, weight and body mass, arterial stiffness, vision, hearing, family history of common diseases, bone density, diet and fitness.

Participants have donated samples of blood, urine and saliva for long-term storage and analysis (including genetic) and have agreed to have their health followed for the next 30 years and beyond.

The information collected will provide key insights as to why some people develop certain diseases and others do not. This will help scientists to better understand the causes and prevention of a wide range of painful, life-threatening and debilitating illnesses of mid to later life. This includes cancer, heart disease, diabetes, dementia, depression, osteoporosis, arthritis, Parkinson’s disease and lung and kidney disorders.

The project has generated a wide amount of coverage in the UK media, including by the BBC.

Further coverage from the BBC can be accessed here.

Recruitment into UK Biobank began in Manchester in 2006. Altogether, 22 assessment centres where people joined the project were opened.

UK Biobank is supported by the NHS. Professor Dame Sally Davies, Chief Medical Officer and Chief Scientific Adviser at the Department of Health, said: “Health research is one of the founding principles of the NHS; it is critical for improved quality of life and more effective healthcare delivery. I thank the 500,000 people who volunteered for UK Biobank. Through UK Biobank we are building on a research tradition to meet the needs of our time and for the sake of future generations.”

UK Biobank is funded by the Wellcome Trust charity, Medical Research Council, Department of Health, Scottish Government, Welsh Assembly Government, Northwest Regional Development Agency and the British Heart Foundation.

Only information that does not identify participants will be provided to scientists working on health-related research for the public good. An independent UK Biobank Ethics & Governance Council has independent oversight of the project on behalf of participants and the general public.

The £4.5 million high-tech store is one of the biggest resources of its kind anywhere in the world. It will keep the 10 million separate samples from the 500,000 participants at -80C for the next several decades. The facility was a runner-up for the prestigious Royal Academy of Engineering MacRobert Award in 2008.

UK Biobank has drawn together specialist knowledge and systems from the UK and other parts of the world to ensure that participant samples can be stored safely and efficiently for many years. The system can work day and night to store – and now, more importantly – to retrieve up to 4,000 samples in 24 hours, more quickly and accurately than can be done by hand. These samples of blood, urine and saliva can then be linked to health information collected at assessment, and to a range of health conditions, making this a hugely important resource for research.

Dr Tim Peakman, UK Biobank Executive Director, said: “As well as its sheer size, this state-of-the-art facility is one of the very real achievements of the project – allowing samples to be stored carefully and retrieved rapidly for the lifetime of the project.”

Each sample of blood is stored in a number of tubes, called aliquots. They are identified by a unique bar code, so that the individual ‘donor’ remains anonymous. A frozen, frost-free storage environment is crucial if the bar codes are to be read and successfully retrieved in years to come.

“Frosting is one of our biggest concerns,” says Dr Peakman. The solution is to ensure that the air circulating within the freezer is as dry as possible – as low as 2 parts per million of water vapour (compared with 10,000 to 12,000 outside on a relatively humid summer’s day). This means that frost cannot form to disable the robotics and make the bar codes on the tubes illegible. Water vapour is removed from compressed air by twin air dryers at the back of the store before feeding it into the system.

Samples are stacked in -80C trays along a 27 metre central ‘corridor’ that is kept at -20C. A robotics system controls the archival and retrieval processes. The system allows for precision storage that could not be achieved by hand; it can put away 8,500 samples in an hour. The freezer is 7 metres wide and 6 metres high. Its full weight is 20 tonnes.

About 100,000 litres of dry air and 5,000 litres of liquid nitrogen are fed through the system each day, making UK Biobank one of the biggest consumers of liquid nitrogen in the country.

The central robotic arm in the freezer, pictured right, can travel at a speed of 2 metres a second, and accelerate at 1.5m/per second/per second. Meanwhile, processing robots in the UK Biobank laboratory do the work of 40 technicians working an 8-hour day.

The archive facility was officially opened by HRH The Princess Royal in 2009. The facility was designed and built with the help of Royston-based company The Automation Partnership.

UK Biobank has developed its Access Procedures, which will govern the way the Resource can be used by scientists to improve the health of future generations.

Between 2006 and 2010, UK Biobank collected a wide range of information on more than 500,000 participants aged 40-69 years.  The study has been designed to allow scientists to examine the complex interaction of genes, lifestyle and other environmental factors in causing a wide range of different diseases.

UK Biobank’s draft Access Procedures underwent public consultation in July of this year. The procedures are based on the principles of access set out in the UK Biobank Ethics & Governance Framework – a document that details how UK Biobank is managed and which was itself the subject of public consultation before the project began.

UK Biobank, a not-for-profit charity, is intended to facilitate health research over the next 30 years to tackle many common illnesses that can cause pain, disability and premature death, typically in middle age.

Key points about access include:

• The resource is open access, although scientists will have to register to use it.
• Approved scientists from around the world will be able to use it for health-related research that is in the public good.
• UK Biobank has built and owns the resource, but there is no preferential access and no requirement for scientists to collaborate with the scientific team that has developed it.
• Stringent measures are in place to ensure that participants are not identified.
• After they have published results based on the resource, scientists will be obliged to share them with UK Biobank so that advances can be built on by others.

Scientists whose applications are approved will be charged only for the cost of the provision of the data or samples they require or, more likely, the cost of undertaking the sample analysis and provision of the results.

UK Biobank expects to go live with its online application system in the spring. Information about the Access Procedures is being made available now to allow scientists the chance to consider how they might make the most of the Resource. This could be done by scientists forming consortia, UK Biobank suggests, which would help with planning, but might also make it easier for researchers to gain funding.

When it goes live, UK Biobank will provide detailed, anonymised information collected from participants during recruitment. UK Biobank hopes to add information on deaths, cancers, hospital admissions, and hospital admissions  during 2012, followed in 2013 by data from primary care and from a re-assessment of the baseline measurements in a sub-sample of participants.

Scientists from both the UK and overseas, and from both academia and industry will be able to use UK Biobank. “This is an open access resource, which means if scientists think it can help with their health research, then we would encourage them to apply to use it. If the research is in the public interest, then we would expect it to be approved. The intention is that UK Biobank is used as widely as possible to tackle a range of illnesses that cause pain, disability and death,” said UK Biobank Principal Investigator, Professor Rory Collins.

Requests for use of samples or to re-contact participants will undergo a more rigorous review than those seeking data only. Information will be provided in such a way that it does not identify participants.

Professor Collins added: “Use of the resource is an investment in the resource because the results of all analyses will be put back into UK Biobank, bringing benefit to the research of other scientists.”

An Access Sub-Committee of the UK Biobank Board will oversee the process. It will be able to call on ethicists, legal experts, other scientists and the independent UK Biobank Ethics & Governance Council as required.

A list of research uses of the resource will be published as these are approved.

UK Biobank is funded by the Wellcome Trust, Medical Research Council, Department of Health, Scottish Government, Welsh Assembly Government and the British Heart Foundation.

One of the biggest developments was the collection of eye measures for the last 100,000 participants in Croydon, Sheffield and Birmingham.

The addition of the sight test, eye pressure measures (testing for glaucoma, a common and avoidable cause of blindness) and a photo and scan of the back of the eye (able to detect problems like retinal detachment) created the biggest study of eyes ever undertaken.

Poor eye-sight reduces quality of life as people age, and can be a risk factor for other major health problems (such as hip fracture).

Professor Peng Tee Khaw at the NIHR Biomedical Research Centre, Moorfields Eye Hospital and UCL Institute of Ophthalmology, London, said scientists were very much looking forward to using this extensive collection of information.

Loss of vision is a major health issue that affects about 2 million people in the UK and, although the vast majority are older, it is estimated that about 80,000 working-age people are affected.

• Evidence suggests that over 50% of these cases are due to preventable or treatable causes.
• Vision loss is associated with increased risk of physical injury, emotional distress and loss of independence. Vision loss increases the chances of falling, and can effect quality of life in many ways, such as becoming dependent on others to prepare meals.
• The commonest registered cause of blindness and visual impairment in the UK (accounting for over 56% of the total) is age-related macular degeneration. Glaucoma (11%) and diabetic retinopathy (6%) are the next most commonly registered causes of significant visual loss.
• Some of the genes that may contribute to inherited eye disorders (including glaucoma and cataracts) have been identified – which may lead to new treatments.
• Dementia is caused by damage in the brain, but research suggests it may be possible to monitor the illness by looking for changes that also occur in the eye.

With all these issues in mind, the UK Biobank Resource will become a powerful study tool in understanding much more about eye disorders, how they affect health and whether or not the eyes can provide an early warning system for other disorders.