Last updated Oct 17, 2018
Thank you for participating in UK Biobank. Please stay in touch with UK Biobank, so that we can tell you about the results as they emerge. We would also like to ask for your further help to make the resource even better (though we will keep these requests to a minimum). You can choose whether or not you wish to help, each time you hear from us.
Who is using the resource?
UK Biobank is open to any bona fide researcher undertaking health related research, anywhere in the world. It is being used by a huge range of scientists studying lots of different health problems. This includes researchers from universities (academia) and from industry.
Currently, most researchers are UK-based and working in academia. UK Biobank hopes more researchers from overseas and working in industry will find the resource of value, and use it to improve the health of future generations.
You can find out about the research currently under way, and where it is being done, by clicking on our interactive map in the Approved Research section of this web site. The Publications section provides a summary of findings that have been written up in specialist research journals, or been presented to conferences.
Improving the UK Biobank resource
From time to time UK Biobank finds out more about your health and lifestyle. This strengthens the resource for health research. One of the easiest ways for us to do this is to contact you directly by email. If you would like to help further, and we do not have your email details, you can provide them here. We also use existing electronic health records to follow your health.
Participants have helped with a number of online questionnaires. We will continue to ask you at intervals what you ate the previous day. We have also asked about work history, your thoughts and feelings and about your cognitive function.
Follow-up of health
UK Biobank is making considerable progress in linking the data it holds on its participants with their health records and other health-related data. These health records are held by third parties, including NHS Digital, the Information Services Division of NHS Scotland and Public Health England. As part of the linkage process UK Biobank sends identifiers (in an encrypted format), such a participant’s date of birth and NHS Number, to these third parties so that the participant can be accurately linked with their own health records. This linkage also incorporates mortality data from the Office for National Statistics.
The linkage to the health records data is undertaken and updated on a regular basis, so that UK Biobank periodically receives information about (for example) new cases of cancer, and death. The health records to which UK Biobank links includes information about stays in hospital (Hospital Episode Records), Mental Health Data and Diagnostic Imaging Data (where a participant has had a scan during the course of hospital treatment).UK Biobank is also establishing links to primary care health records, which are held in general practice (GPs). This will provide useful data on a large number of disorders that cause pain and suffering but tend not result in hospitalisation (such as depression, back pain and diabetes).
This health record linkage enables UK Biobank to follow the health of its participants over many years and is a critical component in the development of UK Biobank as a long-term prospective resource. For the avoidance of any doubt, information that could identify participants is not provided to researchers, who are in any event contractually restricted from seeking to identify any participant.
UK Biobank is using samples of blood donated by participants to provide detailed information about genetic make-up. This will allow scientists to better understand how our genes interact with our lifestyle and environment to cause disease. It may also provide new ways of treating diseases, or spotting them earlier. There are three ways in which genes may be analysed:
- Whole genome sequencing – where every letter in an individual’s genome is measured;
- Exome sequencing – where every letter is measured, but only in those parts of the genome (the exome) that are directly used to produce proteins; and
- Genotyping – where separate letters are measured; this has been the most common approach to date, typically with several hundred thousand letters being measured throughout the genome and associations of regions in the genome found with various conditions.
UK Biobank has already undertaken genotyping of its 500,000 participants and this information is already contributing to health research. More than 800,000 letters (“genotypes”) were measured and this information was used to estimate (“impute”) more than 90 million other genotypes since areas of the genome tend to be passed on together from one generation to the next.
UK-based GSK and Regeneron, from the US, have had an application to undertake exome sequence approved. There are no plans, currently, to whole genome sequence UK Biobank participants, though this may be considered if the costs drop significantly in the years to come.
UK Biobank has began a major programme to MRI scan (image) 100,000 participants which is delivering high-quality pictures of brains, hearts, the body and bones of participants in numbers never possible before. You can find out more about this project by visiting our imaging web site.
Feedback is important to us. Whether it is about your call to the Participant Resource Centre, ideas or suggestions about this website or the Newsletter, or any other aspects of the study, please do let us know. You can use the website feedback form – and don’t forget to tell us if you require a reply.
We hope you will not wish to withdraw from UK Biobank, because the project is of most value if participants stay with the project. However, participants can withdraw at any time without providing a reason. You can find out more about the withdrawal options here.
General Data Protection Regulation (GDPR)
UK Biobank is the data controller of personal data it receives from participants. For more information about UK Biobank’s use of participants’ data and the GDPR please see here: GDPR
Contacting UK Biobank
If you have any further questions about UK Biobank please do feel free to make contact with us.
- Email: email@example.com
- Telephone: UK Biobank Participant Resource Centre, 0800 0 276 276 Monday-Friday 8am-6pm and Saturday 8am-4pm
- Write to us: Participant Resource Centre, Division of Population Medicine, Cardiff University, 5th Floor, Neuadd Meirionnydd, Heath Park, Cardiff, CF14 4YS