UK Biobank


UK Biobank is a long-term prospective biobank study in the United Kingdom that houses the de-identified biological samples and health-related data of half a million people. The volunteer participants aged 40–69 were recruited between 2006 and 2010 from across Great Britain and consented both to share their health data and to be followed for at least 30 years thereafter, with the aim to enable scientific discoveries into the prevention, diagnosis, and treatment of disease.

Background

Based in Stockport, Greater Manchester, UK Biobank is incorporated as a limited company and registered charity in England and Wales, and registered as a charity in Scotland.
UK Biobank holds more than 10,000 variables of data on many of their 500,000 participants to inform research including biological samples, physical measurements, body and brain imaging data, bone density data, activity tracking and lifestyle questionnaire data. Participants continue to provide more data over time. They have over 15 million biological samples stored, which can be requested for use by researchers, and their online database holds over 30 petabytes of data. Their human genome sequencing database, proteomic database, and human imaging project are the largest in the world. The project is enabling scientists to study the onset of diseases such as cancers, heart disease, and age-related conditions in the early stages of their development. Nature has referred to UK Biobank as an "unprecedented open access database."
Since 2012, 30,000 researchers from over 90 countries have registered to use UK Biobank. As of November 2023, there have been over 9,000 peer-reviewed publications using UK Biobank data, including over 3,000 in 2023.
UK Biobank is funded by the Medical Research Council, the Wellcome Trust, UK government and charitable sources, and philanthropic donations.

History

UK Biobank was conceived in the early 2000s and founded in November 2003. Professor Sir Rory Collins was appointed as the Principal Investigator and Chief Executive of UK Biobank in 2005.' An incremental approach was adopted to developing the study procedures and technology, using systems designed and developed by the Clinical Trial Service Unit. This consisted of a series of pilot studies of increasing complexity and sophistication with interludes for assessment of results and additional scientific input. In-house trials were conducted during 2005, and a fully integrated clinic was run at Altrincham, Greater Manchester throughout Spring 2006 where 3,800 individuals were assessed. On 22 August 2006, it was announced that the main programme would recruit men and women aged between 40 and 69 based from up to 35 regional centres.
Following the initial pilot stage in the 2005–06 period, the main study began in April 2007 and by the end of that year 50,000 people had taken part. Recruitment reached 100,000 in April 2008, 200,000 in October 2008, 300,000 in May 2009, 400,000 in November 2009 and passed the 500,000 target in July 2010. The volunteers were largely healthy, wealthy and white European. Rather than recruiting more participants into the biobank, the organisation is helping other institutions establish and run similar initiatives. Participant enrolment was declared complete in August 2010. However recruitment proved more efficient than hoped and only 22 centres had been opened when the recruitment target of 500,000 was reached in 2010.
In May 2023, UKRI announced that UK Biobank was set to receive £127.6 million to move to a purpose-built facility at Bruntwood SciTech's Manchester Science Park.
In October 2023, a number of funders including Eric Schmidt and Ken Griffin announced further funding for the next five years.

Design

The study is following about 500,000 volunteers in the UK, enrolled at ages from 40 to 69. Initial enrolment took place over four years from 2006, and the volunteers will be followed for at least 30 years thereafter.
Prospective participants were invited to visit an assessment centre, at which they completed an automated questionnaire and were interviewed about lifestyle, medical history and nutritional habits; basic variables such as weight, height, blood pressure etc. were measured; and blood and urine samples were taken. These samples were preserved so that it was possible to later extract DNA and measure other biologically important substances. During the whole duration of the study it was intended that all disease events, drug prescriptions and deaths of the participants are recorded in a database, taking advantage of the centralized UK National Health Service.
During the initial physical examination, basic feedback was provided to the participant regarding their weight, height, BMI, blood pressure, lung vital capacity, bone density and intra-ocular pressure; however if any other medical problems were detected, neither the participant nor their physician would be notified. Problems detected later, such as genetic risk factors, were not conveyed to either participant or physician.
From 2012 researchers were able to apply to use the database. A typical study using the database might compare a sample of participants who developed a particular disease, such as cancer, heart disease, diabetes or Alzheimer's disease, with a sample of those that did not, in an attempt to measure the benefits, risk contribution and interaction of specific genes, lifestyles, and medications.
In 2017 researchers were able to access the database including genetic information. By 2017 Biobank participants had approximately 1.3 million hospitalisations, 40,000 cancer incidents with 14,000 of them having died.

Initial information collected

The study was initially launched with a visit consisting of the following:
  • A paperless consent process
  • A touchscreen questionnaire on lifestyle and general health
  • Touchscreen tests of memory
  • An interview with a nurse on detailed medical history
  • Measurement of blood pressure
  • Measurement of sitting and standing heights
  • Measurement of weight
  • Body composition measurement using impedance
  • Measurement of grip-strength
  • Breath spirometry
  • Ultrasound bone densitometry of the heel
  • Collection of blood and urine samples
Once the visit-based assessment method was proven, the range of investigations was extended to include:
Since the completion of recruitment several new types of data have been added:
  • During 2011–12 participants who supplied an email address were asked to assist by completing web-based dietary questionnaires, with the aim of combining a series of daily 'snapshots' to form a picture of overall nutrition. 176,012 of the participants responded at least once and 27,535 completed four questionnaires over a 16-month period.
  • During 2012–13 25,000 participants at the Stockport centre were asked to attend the assessment centre to repeat the initial measurements. It was intended to repeat these assessments every few years.
  • In 2013 to 2015, Axivity AX3 tri-axial wrist physical activity monitors were distributed to 100,000 participants, which recorded week-long triaxial acceleration at 100 Hz. This data was centrally processed, and listed on the Data Showcase.
  • In 2014 and 2015, 120,000 participants completed a questionnaire on cognitive functions. Four of the tests were repeats of the initial assessment and two tests were new.
  • A new type of assessment centre opened in 2014 to collect imaging data. The visits extended the initial dataset to include magnetic resonance imaging scans of brain heart and abdomen, as well as neck-to-knee volumetric MRI scans, whole body dual-energy X-ray absorptiometry scan of bones and joints, ultrasound measurements of the carotid arteries and resting 12-lead electrocardiogram. Initial data on 4,000 participants was released at the end of 2015 and by mid-2018 over 25,000 participants had been scanned. It is planned to scan 100,000 participants by 2022, and to do additional repeat scans on 10,000 of these 2–3 years later.
  • In 2015 and 2016, 117,500 participants completed questionnaires on occupational history and related medical information.
  • In 2016 and 2017, 137,400 participants completed questionnaires on mental health events including subjective well-being estimates, psychotic experiences, self-harm behaviours, traumatic events and cannabis and alcohol use.
  • A set of additional assays on the blood and urinary samples were being conducted in 2016 and 2017 with blood results expected to be released in Q4/2018.
  • A genomic assay of 820,967 SNPs was conducted on the participants blood samples. Data from an initial 150,000 participants were released in 2015, the remainder in July 2017, and the first results in October 2018.
  • Information from UK registries of death and cancer were linked to the main Biobank dataset on an ongoing basis.
  • Data from NHS hospital inpatient records were linked to the main dataset on an ongoing basis.
  • In 2019 exome sequence data from 50,000 persons was released, with 470,000 being available in 2023.
  • In 2020 20,000 volunteers agreed to collect and send a monthly blood sample for analysis of SARS-CoV-2 antibodies. They included existing Biobank participants and their children and adult grandchildren living in separate households.
  • In 2021 NMR metabolomic data on approximately 121,000 persons was released.
  • In June 2021, a subset of volunteers who had acknowledged that they had already received at least their first COVID-19 vaccine dose, were asked to participate in a study to determine if their COVID-19 antibodies were as a result of their vaccination or from a prior infection.
  • In October 2023, measurements of circulating proteins assayed by Olink's Proximity extension assay DNA-linked antibody technology were published for a subset of ~53,000 UK Biobank participants. The UK Biobank Pharma Proteomics Project was funded by a consortium of pharmaceutical companies.
  • In 2023 UK Biobank released the whole genome sequencing data of all 500,000 participants, the largest number of whole genome sequences ever released for medical research. The release was supported by UKRI, Wellcome, industry partners including Amgen, AstraZeneca, GSK, and Johnson & Johnson, with sequencing conducted by deCODE Genetics and the Wellcome Sanger Institute.''''''