Improving the health of future generations
Health researchers across Europe have a powerful new tool at their disposal to tackle a wide range of painful, debilitating and life threatening illnesses of mid to later life.
UK Biobank is open for business. It is a large-scale, detailed, population-based prospective study open to approved researchers from around the world, including from industry and academia. It prides itself on being open access, having been funded by the UK government (Medical Research Council and the Department of Health) and the UK’s largest medical charity, the Wellcome Trust.
Following the lives of 500,000 people aged 40-69 years at recruitment, it is one of the biggest and certainly the most detailed study of its kind ever undertaken. Its goal is to to better understand the complex interaction of lifestyle and genes in causing heart disease, dementia, cancer, diabetes, stroke, arthritis and a wide range of other life-threatening and disabling disorders.
A wide range of information on participants, who volunteered to take part in the project, has been collected for health research, such as:
- Detailed information on a range of lifestyle, behavioural and socio-demographic factors
- A range of physical measures such as height, weight, hand grip strength and BMI
- Specimens of blood, urine and saliva for long-term storage and analysis, including genetic
Towards the end of recruitment a number of enhancements were added to ensure comprehensive data for scientists, including detailed eye measures, a hearing test, a diet questionnaire and a bike/ fitness ECG test.
Since then work has continued to enhance the resource. Linkage to cancer and death statistics as well as to NHS inpatient hospital admissions has been achieved, with linkage to primary care (general practice), A&E, outpatient records and other health care data in development.
The first repeat assessments on 20,000 participants, to allow researchers to make adjustments for measurement fluctuations and error, are now complete. Participants will undergo further repeat assessment visits every few years.
Meanwhile, genetic analysis of all 500,000 participants is well underway and data will start to be made available for research soon.
The feasibility phase of a study to undertake brain, heart, body and bone imaging, on 100,000 participants is underway, as is the analysis of 37 key blood and urine biochemistry markers.
If that’s not enough, 100,000 participants have worn a physical activity monitor on their wrists for a week, and many more have undertaken an online questionnaire examining their mental agility. It is quite possible a large number of infectious diseases analyses will be undertaken too.
In collaboration with the National Cancer Intelligence Network, data on stage and grade of cancer diagnoses will soon be integrated into the resource.
Breadth and depth
“Researchers very often don’t quite believe us when we tell them about the project,” says UK Biobank Chief Scientist Professor Cathie Sudlow. “The breadth and depth of data we have collected is very exciting. We are very grateful to those people who have given up their time to join the project; now we all just want to see it used well to improve treatments and prevent disease.”
UK Biobank is helping to channel new energy into research into a wide range of diseases. A number of disease specific groups have been established to consider how best to use and enhance the resource.
Unique collection of eye data. For instance, UK Biobank now contains a wide range of data on the eyes of 112,000 participants. This includes visual acuity, auto-refraction and intraocular pressure. In addition, simultaneous digital fundus photography, as well as macular optical coherence tomography was carried out on more than 67,000 participants.
UK Dementias Platform
UK Biobank will contribute to a new resource for research into dementia, called the MRC UK Dementias Platform.
This is a multi-million pound public-private partnership, developed and led by the Medical Research Council, to accelerate progress in, and open up, dementias research. The UKDP’s aims are early detection, improved treatment and ultimately, prevention, of dementias.
The UKDP is creating the world’s largest population study for use in dementias research, bringing together two million participants aged 50 and over, from 22 existing study groups within the UK, including UK Biobank. Included are people from the general population, people known to be at-risk of developing dementia, and people diagnosed with early-stage dementia.
Chronic & life-threatening illnesses
This huge data collection is creating a large and extraordinarily detailed health resource available for a wide range of studies into diseases like cancer. With 5 years and more of follow up, the UK Biobank resource offers the opportunity for rigorous analyses of cancer and how it develops. This ought to provide opportunities to develop new treatments.
Linked clinical data will be strengthened over the coming years with cancer stage and grade, as a special UK Biobank cancer working group oversees new developments in the identification and characterisation of cancer outcomes to facilitate research efforts.
A great asset
“When the funders sat down to talking about building a resource such as UK Biobank more than ten years ago, I doubt they really imagined how the advances in research technology and our ability to gather and store information quickly and safely might have advanced so far,” says Professor Sudlow. “But their vision was to create a resource that all scientists, wherever they might be, could draw upon to improve health, and our advances in technology and our understanding of the processes involved have made that dream a reality.”
The resource is now working with other similar projects in the UK and elsewhere in Europe and the rest of the world, to standardise and create more powerful datasets.
“We really do want this resource to be used widely,” says Professor Sudlow. “It has been built for the scientific community and we welcome feedback and new ideas.”
In terms of lessons learned, perhaps the most important is that thinking big works. The support of the public and the research community has been paramount in helping UK Biobank meet its goals on time and within budget.
The UK public have greeted UK Biobank with enthusiasm. Around one in 50 people of the relevant age group are now participants in UK Biobank, evidence of the strong support for research that exists and an understanding of what is required to improve health.
UK Biobank plans to keep them involved via its website and with annual newsletters and its dedicated Participant Resource Centre (PRC) so that they will continue to support the project and participate in research for many years to come.
But for now, it is up to the research community to find innovate ways of using UK Biobank to improve the health of future generations.