In the American Journal of Epidemiology, Dr Teri Manolio, at the National Human Genome Research Institute, USA, discusses how the UK Biobank concept might be possible in the US, though in all likelihood, at much greater cost. She says: “Large, prospective studies are indispensable for the identification of causes of disease…” She says there are useful lessons to learn from the UK Biobank experience. “A key lesson from UK Biobank and similar studies is that large studies are not simply small studies made large but, rather, require fundamentally different approaches in which “process” expertise is as important as scientific rigor.”

The Public Health Journal says that biobanks are becoming a key resource and ‘goldmines’ for research. “With an emphasis on efficient, high quality procedures, tested in a number of pilot studies, the UK Biobank has set the standard for modern population-based biobanking,” it says.

The UK’s prestigious health journal The Lancet carried a Commentary on UK Biobank which it hopes will encourage scientists to use the resource.

You can read more about these studies on the UK Biobank Resources page of this website.

BBC’s Today programme interviewed UK Biobank Principal Investigator Professor Sir Rory Collins about the study on Friday morning, 30th March 2012.  Channel 4 News carried a piece about UK Biobank on its Friday evening bulletin. Articles were carried in a wide range of newspapers and magazines, including the New Scientist, Nature and Reuters.

Further links: 

http://www.bmj.com/content/344/bmj.e2459

http://blogs.nature.com/news/2012/03/welcome-to-the-biobank.html

http://www.wellcome.ac.uk/News/2012/News/WTVM054831.htm

www.mchiec.org.uk/news/…/uk-biobank-opens-for-research

www.scripintelligence.com/…/UK-Biobank-offers-its-wares-as-…

http://www.bionews.org.uk/page_137191.asp

bengoldacre.posterous.com/uk-biobank-opens-up-data-to-scie…

http://news.sciencemag.org/scienceinsider/2012/03/britains-biobank-is-open-for-bus.html?ref=ra

https://www.simplyhealth.co.uk/sh/…/health-news-article.jsp?…

www.biocentury.com/…/uk-biobank-debuts-names-rawlins-ch…

http://www.smartplanet.com/blog/rethinking-healthcare/uk-biobank-worlds-biggest-biomedical-database-opens-today/8380

http://topnews.us/content/247287-one-largest-health-resources-be-made-available-researchers

http://newspoint.co.za/story/412/2177-introducing-medical-data-britain-volunteers-research-purpose

http://www.phgfoundation.org/news/11538/

http://www.labnews.co.uk/news/uk-biobank-opens/

http://medicalxpress.com/news/2012-03-uk-biobank.html

http://www.guardian.co.uk/science/2012/mar/30/uk-biobank-medical-records-britons-online

http://www.pharmatimes.com/Article/12-04-03/UK_Biobank_opens_up_data_to_researchers.aspx

http://www.egovmonitor.com/node/48686

Professor Rory Collins discusses the exciting potential for UK Biobank with journalists. Dr Wendy Ewart, MRC, and Professor Danny Altmann, Wellcome Trust, look on. Photo Wellcome Images.

View Data Showcase
Scientists: Apply to use the UK Biobank resource

An incredible snapshot of the health and lifestyles of 500,000 Britons – including 26,000 people with diabetes and 50,000 with joint disorders, 41,000 teetotallers, and 11,000 heart attack patients – is now available for medical research. And it is all thanks to the generous people who have taken part in UK Biobank.

 With more than 1,000 separate pieces of information already available on volunteers aged 40-69 when they joined the project, UK Biobank has amassed one of the most detailed large-scale health resources ever, with the goal of improving the health of future generations.

 Importantly, this information will grow as the participants’ stored samples are analysed and their health is followed over many years, building a key resource for research into a wide range of illnesses that cause pain, disability and premature death.

 UK Biobank will gain in value for health research, as: 

• Results of tests on donated blood, urine and saliva samples, including genetic tests, are included in the resource;
• Changes in participants’ health are recorded via electronic records (eg general practice, hospital statistics, cancer and death registers);
• Results from studies using UK Biobank are put back into the resource for other researchers to use;
• Additional or more detailed information about the participants is added (eg physical activity, diet, work and residential questionnaires and possibly, body scanning), and repeat measurements are undertaken.

Participants were recruited from Scotland, England and Wales over four years (2006-2010), via 22 assessment centres. Measures of height, weight, body fat, hand grip strength, bone density, lung function and blood pressure were taken, along with information about medical histories and lifestyles. Memory, diet, early life factors and psychosocial events (such as how often people see family and friends) were also recorded. The last 100,000 participants also had hearing, fitness and eye tests (creating the biggest eye study ever, in the process). 

The resource so far stretches to about 20TB (terabyte) of securely-stored data, the equivalent of 30,000 CDs stacked to a height of about 35 metres. It will grow hugely over the coming years. For example, ten times more information would be added if an exciting plan to do specialised imaging scans in one fifth of all participants gets the go-ahead.

UK Biobank will allow scientists working on health-related research that is in the public interest to access the resource to find out why some people develop particular diseases in mid to later life and others do not. This will pave the way for new treatment and preventive strategies. 

The resource is expected to advance research into the causes, prevention and treatment of a large number of chronic, painful and life-threatening illnesses, such as cancer, heart disease, stroke, diabetes, dementia, depression, arthritis, and eye, bone and muscle disorders. 

Scientists from the UK and overseas, irrespective of whether they are from academia, industry, charity or are government-funded, will be able to use the resource subject to checks that the research is health-related and in the public interest.  Only information that does not identify participants will be provided to researchers. 

Applications to use the resource will be made online. Careful checks will be carried out by the UK Biobank team. The process will be overseen by the Access Sub-Committee of the UK Biobank Board. The independent UK Biobank Ethics & Governance Council also has oversight of the system. 

An online Data Showcase will allow scientists and the public to see a summary of the information collected so far. Successful applications to use the resource will also be published on the website as they are approved. 

“This is without doubt a very exciting day for medical research, not just in the UK but around the world,” said UK Biobank Principal Investigator, Professor Sir Rory Collins. “We are grateful to participants for their trust and support so far. But they have not joined the project to see it remain idle; we all want to see the resource used extensively to bring about benefits to health and wellbeing.” 

Professor Dame Sally C. Davies, Chief Medical Officer and Chief Scientific Advisor
Department of Health, said: “UK Biobank is a globally unique resource which places the UK at the forefront of the quest to understand why some people develop life threatening diseases or debilitating conditions. It has huge potential for future generations and will help us understand how our children and our children’s children can live longer, healthier lives.”

UK Biobank is about to undertake repeat measures of 20,000 participants from the Manchester area. Later in the year, it will ask participants to wear an activity monitor for one week. UK Biobank has had almost 400,000 responses to its online follow-up diet questionnaire.  

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

UK Biobank has announced that its new Board Chairman is Professor Sir Mike Rawlins, who chairs the National Institute of Health & Clinical Excellence (NICE). He replaces Sir Alan Langlands, Chief Executive of the Higher Education Funding Council for England (HEFCE), and former Chief Executive of the NHS, who stands down after more than eight years of successfully steering the project through its set-up, recruitment and opening phases.

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

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.

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.

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.

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.