The first phase of UK Biobank is now complete. More than 500,000 people have joined the project and provided detailed information on their health and lifestyle, creating the foundations of a life-long resource to help scientists understand why some people get illnesses like heart disease, stroke, cancer, dementia and arthritis and others do not.
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
General Practice Extraction Service (GPES)