Joint Programming Initiative

More Years, Better Lives

The Potential and Challenges of Demographic Change

UK Biobank
UK Biobank

Topic
Health and Performance
Relevance for this Topic
Country United Kingdom
URL
More Topics

Governance

Contact information

UK Biobank Limited
UK Biobank Limited
1-2 Spectrum Way
SK3 0SA Adswood, Stockport
United Kingdom
Phone: Enquiries from scientists about using the UK Biobank Resource should be directed in the first instance to +44(0)800 0 276 276 (free from most UK land lines) or +44(0)2920 765597, 8am-7pm Monday-Saturday.
Email: No email address is provided, but the website has a feedback form. See: http://www.ukbiobank.ac.uk/
Url: http://www.ukbiobank.ac.uk/

Timeliness, transparency

There is a bespoke timetable for future linkage and collection of data. For more information, see: http://biobank.ctsu.ox.ac.uk/crystal/exinfo.cgi?src=future_timelines

Type of data


Other, please specify

Type of Study

Longitude survey: long-term study of the same sample

Data gathering method

Face-to-face interview (CAPI, PAPI)

Self-administered questionnaire


Written consent; Touch screen questionnaire; Face-to-face interview; Clinical and health measurements


Access to data


UK Biobank is an open access resource. The resource is open to bona fide scientists, undertaking health-related research that is in the public good. Approved scientists from the UK and overseas and from academia, government, charity and commercial companies can use the resource. There are 4 steps to using the UK Biobank resource: • Registration: To confirm the identity of each person intending to use the Resource and to check their bona fides before registering them as a potential user; • Preliminary application: To allow researchers to determine: (i) whether their proposed research use is likely to be approved; (ii) whether the resource contains the data and/or samples required for their proposed research; and (iii) the indicative cost of obtaining such data and/or samples (e.g. in preparation for a funding application); • Main application: To allow UK Biobank to assess: (i) whether the proposed research use meets the required criteria for access (including legal and ethics standards); (ii) whether the amount of depletable sample required is scientifically justified; and (iii) the cost of providing such data and/or samples; • Material Transfer Agreement (MTA): For approved applications, the Material Transfer Agreement will need to be executed and access charges paid before release of data and/or samples to the Approved Researcher. What is the cost?: The cost of applying for use is £250, with any additional costs (such as those related to providing data or samples) to be charged on a cost-recovery basis and payable only on execution of the Material Transfer Agreement for successful applications. UK Biobank will keep this policy under review, including the possibility of having different levels of charge for different types of user. How can the most be made out of using the resource?: Using UK Biobank is an investment in it, since all results and analyses will be put back into UK Biobank for others to benefit from. UK Biobank encourages the formation of consortia or disease-specific user groups, particularly with regard to the use of samples which will deplete over time. Please contact UK Biobank Access Management Team if you have any ideas or suggestions. UK Biobank is a tool for health research. The resource is available to all bona fide researchers for all types of health-related research that is in the public interest, without preferential or exclusive access for any person. All researchers, whether in universities, charities, government agencies or commercial companies, and whether based in the UK or abroad, are subject to the same application process and approval criteria. On the Biobank website, you will find a link to the UK Biobank Access Procedures. The Principles of Access underlying these Procedures are set out in the UK Biobank Ethics & Governance Framework. You can register to use the UK Biobank resource via the website, or visit the UK Biobank Data Showcase. This provides information about the data held within the resource and ought to be sufficient to allow researchers to decide whether or not they wish to use it. A list of research uses can be found under the link Approved research.

Conditions of access


UK Biobank’s overriding objective is to encourage the extensive and appropriate use of the Resource for such research. The procedures and processes that have been applied to access to the Resource derive from the following key principles: • UK Biobank will seek active engagement with participants, researchers and society in general throughout the Resource’s lifetime (which is intended to be some decades), in particular regarding the research that is being conducted on it and the research findings that emerge. • All applications to use the Resource will be checked to ensure that they are consistent with the Access Procedures, Withdrawal Protocol, the Ethics & Governance Framework, and the consent that was provided by the participants, and that they have any relevant ethics approval that is required. • The Resource is available to all bona fide researchers for all types of health-related research that is in the public interest, without preferential or exclusive access for any person. All researchers, whether in universities, charities, government agencies or commercial companies, and whether based in the UK or abroad, will be subject to the same application process and approval criteria. • Access to the biological samples that are limited and depletable will be carefully controlled and coordinated. The quantity of sample that is required will be judged against the potential benefits of the research project, with advice from appropriate experts when required. • Safeguards will be maintained to ensure the anonymity and confidentiality of participants’ data and samples. Researchers will enter a legal agreement not to make any attempt to identify participants, and the data and/or samples provided by UK Biobank to researchers will not identify any particular participant (i.e. they will be “anonymised”). • Applicants will be expected to pay for access to the Resource on a cost-recovery basis, with a fixed charge for managing the application review process and a variable charge depending on how many samples, tests and/or data are required for the approved research project. • UK Biobank will remain the owner of the database and samples, but will have no financial claim over any inventions that are developed by researchers using the Resource (unless they are used to restrict health-related research or access to health-care unreasonably). • All users will be required to publish their findings and return their results to UK Biobank so that they are available for other researchers to use for health-related research that is in the public interest. Further information about UK Biobank data management, a summary of its de-identification protocol, data linkage and information on VAT is available on the Biobank website: http://www.ukbiobank.ac.uk/


This depends upon the user and conditions of use.


Anonymised microdata


Bespoke


English


Coverage


During 2006-2010, UK Biobank conducted its recruitment phase of more than 500,000 participants who gave their consent, answered questions, had physical measurements and gave samples (blood, urine and saliva) at a baseline assessment visit. Follow-up of their health is now being conducted through medical and other health-related records. Access systems have been developed to facilitate use of the UK Biobank resource by bona fide researchers for health-related research that is in the public interest.


2006-2010


The data includes a variety of demographic variables, including age and sex. The sample is not stratified.


Administrative registers (such as those held by the NHS)


Great Britain; Assessments were undertaken in 22 centres in Scotland, England and Wales. Detailed protocols and other related information can be found in the Resources section of this website.


Adults aged 40-69 between 2006 and 2010


UK Biobank aimed to be as inclusive as reasonably possible, with all people aged 40–69 years who were registered with the National Health Service and living up to about 25 miles from one of the 22 study assessment centres invited to participate. Overall, about 9.2 million invitations were mailed in order to recruit 503,325 participants (i.e. a response rate of 5.47%).


UK Biobank is a major national health resource, and a registered charity in its own right, with the aim of improving the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses – including cancer, heart diseases, stroke, diabetes, arthritis, osteoporosis, eye disorders, depression and forms of dementia. UK Biobank recruited 500,000 people aged between 40-69 years in 2006-2010 from across the country to take part in this project. They have undergone measures, provided blood, urine and saliva samples for future analysis, detailed information about themselves and agreed to have their health followed. Over many years this will build into a powerful resource to help scientists discover why some people develop particular diseases and others do not. There were four parts to the UK Biobank assessment process, which lasted between 2-3 hours (depending on whether or not a number of enhancements to the assessment, added in the later stages of recruitment, were in operation at the time of assessment). • Written consent • Touch screen questionnaire • Face-to-face interview • Measurements The touch screen questionnaire was specially designed to be easy to use. It allowed participants more privacy to answer questions, and to complete the form in their own time. Information was collected securely and could be stored safely within minutes of the participants leaving the assessment centre. UK Biobank was also able to ask participants to undergo a hearing test and cognitive function tests as part of the touch screen process. Information collected about health, particularly relating to serious illness, operations and other procedures, and medication was then discussed in more detail with participants by a study nurse. Electronic signature pad • Standing and sitting height; • Waist and hip circumference; • Weight and bioimpedance; • Hand grip: both hands were measured in turn using a device called a dynamometer; • Spirometry; • Bone density, at the heels; • Arterial stiffness using an infra-red finger probe; • Eye measurements; • Fitness assessment using a static bike; • Detailed web-based diet questionnaire. Each participant donated about 3 tablespoons of blood as well as urine. Saliva samples were provided by some, but not all, participants.


See the UK Biobank website, in particular the pages on approved research: http://www.ukbiobank.ac.uk/approved-research/


Linkage


This data source has various standardised health measures. The volume of health measures is quite large and therefore, an exhaustive list is not provided here.


Data are anonymised


Data quality


For information on data quality, see the UK Biobank website


There are no major breaks for this data source


In general, the consistency of this data source is good. For more information on data quality, see the UK Biobank website.


Applicability


UK Biobank was established by the Wellcome Trust medical charity, Medical Research Council, Department of Health, Scottish Government and the Northwest Regional Development Agency. It has also had funding from the Welsh Assembly Government and the British Heart Foundation. UK Biobank is hosted by the University of Manchester and supported by the National Health Service (NHS). It works with researchers from a large number of British universities. The medical research project is a non-profit charity and had initial funding of about £62 million. UK Biobank has had additional funding of £6m for extra baseline measurements (such as the eye measures and saliva samples) and £25m for the next 5 years, 2011-2016 (such as storage of samples, and developing the online access facility that will allow scientists to use the Resource). This information is not readily available.


  • The information about this dataset was compiled by the author:
  • Mike Murphy
  • (see Partners)