From our plans to re-contact participants to how we are linking to general practice records, find out more about a wide range of activities going on at UK Biobank.
Re-contact is a crucial part of the study
Turning precious samples into re-usable data
Eye & vision consortium
Linkage to general practice records: an update
UK Biobank helps deliver the National Biosample Centre
Around 70,000 participants have worn our activity monitors, and we expect to reach our target of 100,000 by the autumn. Thanks to everyone who is participating.
The monitor is able to track activity (and non-activity, like resting and sleep patterns) and provides a useful measure of energy expenditure. It is not designed to measure how strenuous one activity is over another, but algorithms are being developed to identify key activities like walking and running.
Find out more about the actitvity monitor: http://www.ukbiobank.co.uk/physical-activity-monitor/
An important part of the UK Biobank project is to be able to re-contact participants. This allows us to keep you informed about what is being achieved, and to give you the opportunity to help further if you wish to do so.
We do not want to over burden you with requests to help, but equally the opportunity to find out more about your changing health and lives will make the resource even more useful for research. Indeed, there are lots of scientists thinking about how you might be able to assist their research further, and we would like to help them if we can.
UK Biobank will monitor its re-contact with you. Participants only need respond to those requests for help that they feel able and willing to be involved with. If you feel we are asking for too much, please do let us know.
Up and coming projects include a questionnaire about occupational history. UK Biobank is also trialling the wearing of a special monitor to record heart rhythm. The device will be worn for a couple of weeks and will help with research into a potentially serious but common heart condition known as arrhythmia, when the heart may beat too fast or too slow.
Blood, urine and saliva samples collected from participants are stored in purpose-built freezers for analysis now and in many years to come.
Unlike information collected about health and lifestyle, which is in the form of written data and can be used and used again, samples are particularly precious because they will be depleted over time.
In order to make the most of these samples, UK Biobank is keen to turn them in to re-usable data. These data could then be provided to researchers without using up the resource’s sample store. We are doing this by undertaking some of the basic analyses of the samples ourselves – making the results of these analyses, rather than the samples themselves, available for research.
This has a number of advantages. It preserves as much of the sample as possible because it allows multiple tests to be done simultaneously. Doing the same analyses on all the samples at the same time also helps with quality control and keeps down costs
Coordination of the assays also reduces the need to thaw and re-freeze samples many times, which may affect their quality.
Thirty-six basic ‘markers’ in blood that are useful to the widest range of scientists, are the first being analysed in all 500,000 participants (like hormones and cholesterol). We hope, too, to be able to look for evidence of particular infections (such as Epstein Barr virus and Human Papilloma virus) which are implicated in some cancers, as well as in cardiovascular disease and depression.
There is increasing interest in how our eyes might be able to alert doctors to a wide range of health problems. Apart from those relating specifically to vision – like macular degeneration and glaucoma, which can lead to blindness in the eye may also provide early warning of other disorders, including diabetes, high blood pressure, heart disease, dementia and stroke.
Studying the structure of the eye may help treatment for eye disorders caused by diabetes (which is the commonest cause of vision loss in working-aged individuals in the UK), and age-related macular degeneration (the commonest cause of vision loss in the elderly). The macular nerve fibre layer may be thinned in glaucoma (the commonest cause of irreversible vision loss worldwide) and in neurodegenerative diseases like dementia. The macula is a tiny, grain of rice sized part of the retina at the back of the eye and has a high concentration of cells that detect light. It is responsible for much of our vision particularly that in colour and fine detail.
About 120,000 UK Biobank participants took part in the eye related component of the original assessment visit. An Eye and Vision Consortium has now formed to help make best use of the exciting data generated from these participants. This consortium of leading eye specialists from across the country has identified 12 areas of research, including cataracts, retinal detachment, polymyalgia, short and long sightedness and astigmatism, visual health and sight impairment.
These data are also available to other researchers since there is no exclusive access by any one research group or consortium, and will also be incorporated into other research projects, (such as those investigating dementia).
With regard to dementia research, the eye is one of the few places in the human body that allows easy, non-invasive observation of blood vessels. There is mounting evidence that changes associated with retinal nerve fibre vessels may be related to dementia.
UK Biobank is developing electronic systems to follow participants’ health via a variety of health records. The project is already linking to UK cancer and death registers, and hospital information via Hospital Episodes Statistics (HES) data. These are all now providing regular updates.
A number of systems are being developed to follow health via GP practice records, as the processes vary in Scotland, England and Wales. Building on the consent that UK Biobank participants have already given us to access their medical and other health-related records, we appreciate the ongoing support of GP practices to assist in this process.
UK Biobank is supported by the NHS and the Department of Health. The detailed health information available from the NHS is one of the key factors that sets UK Biobank apart from other similar projects around the world.
Considerable effort is being channelled into ensuring that health information provided to UK Biobank is as accurate as it can be. The quality of health information will be monitored and scientists will develop systems to check it is as complete as possible. UK Biobank would like to link to other health records – such as any NHS brain scans and stored tumour tissue – so that it can provide the most accurate and detailed information to researchers.
Diseases are now being sub-defined to separate apparently similar illnesses that have quite different causes. For instance, a stroke may have one of two possible causes – a burst blood vessel in the brain (haemorrhagic) or a blockage in one of the brain’s blood vessels (ischaemic). Despite sharing similar symptoms, they have quite different causes and treatments, and it is important that the resource reflects this.
Cancers are also now sub-defined according to their genetics, providing useful data for choice of treatment and prognosis. High quality, detailed research into the causes and treatments of cancer benefits from analysis of cancer tissue samples, which are taken during biopsy procedures, or operations. UK Biobank is conducting a pilot study in the Newcastle area, working with NHS pathology departments to investigate the possibility of identifying these samples from UK Biobank participants, and retrieving them for research if they are no longer required for the clinical management of the disease. This is another way that UK Biobank could provide crucial information to health researchers about the subtle differences in cancers from person to person, and why some respond better than others to treatment.
We are holding a series of events across the UK to tell you how the resource is being used. We held the first such event in Edinburgh, as there has been a particularly high number of research applications from Scotland to use the resource. Participants heard from scientists conducting health research using UK Biobank and from Professor Cathie Sudlow, our Chief Scientist, on how it is being made more useful for researchers.
With the opportunity for questions and discussion over a glass of wine, an enjoyable evening was had by all. The first of many; we now have a series of events planned for 2015. Look out for your invitation to an event in your area over the coming months. We are looking forward to meeting you!
We have been heartened by the high response to our requests for further help over the past year – the activity monitor, our Healthy Minds initiative, and the imaging study are the main ones. Where necessary, we pilot new projects first – such as the imaging project in Manchester – and roll them out when we have shown that they can be done. Budget is always a factor, but ensuring the new projects are acceptable to participants is our main priority.
Expertise gained during the development of UK Biobank is being used to create a national centre for storing and analysing blood samples. Supported by the National Institute for Health Research (NIHR) and the Department of Health (DH), the National Biosample Centre in Milton Keynes will provide a centre of excellence for the long-term storage and retrieval of important biological samples.
One of the first projects to benefit is the Genomics England study, which is seeking to genotype 100,000 NHS participants. Data from this study will be available alongside information from UK Biobank, meaning the studies will complement each other in the goal to improve health over many years.
Biocentre website: http://www.ukbiocentre.com/