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.
UK Biobank has recently updated the Data Showcase to include data about deaths and prevalent and incident cancers. Hospital Episodes Statistics (HES) and data on the repeat assessment of 20,000 participants from the north west of England are also available.
Please note: UK Biobank is not representative of the general population on a variety of sociodemographic, physical, lifestyle and health-related characteristics, with evidence of a ‘healthy volunteer’ selection bias, details of which are published elsewhere (Fry et al, Am J Epidemiol 2017;186:1026-34. PMID 28641372). As a result, UK Biobank is not a suitable resource for deriving generalizable disease prevalence and incidence rates.
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. Follow this link to find out more about approved research projects so far.
There are 3 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;
Application: To allow researchers to determine and UK Biobank to assess: (i) whether the proposed research use is likely to be approved and 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.
UK Biobank’s approach is to facilitate access to the data within the resource. UK Biobank’s access criteria is that the UK Biobank resource is available to all bona fide researchers for all types of health related research that it is in the public interest, without preferential or exclusive access to anyone.
The purpose of this note – in response to a number of queries from researchers – is to clarify that UK Biobank does not require the researcher to be undertaking a research project involving the study of a particular health outcome or particular risk factor. UK Biobank recognises that many research projects may be:
agnostic as to any particular health outcome / risk factor (i.e. not hypothesis-driven);
involve the study of a range of different genotypes and/or phenotypes (e.g., GWAS +/or eWAS,PheWAS); or
methodological in nature (e.g., involved in the development of methods to create derived data-fields that will be of use to others).
UK Biobank welcomes such requests as it makes no distinction based on the type or categorisation of access request as long as the scope of the research project can be objectively defined (a request to study anything that the researcher considers relevant will not be successful).
In any event, these criteria will be used to determine the legitimacy of an access request, and as such (and in light of the above) researchers should feel free to make such applications as they consider appropriate.
UK Biobank would finally note that because of the depletable nature of samples and participant goodwill, applications for samples and re-contact studies will be required to demonstrate explicit scientific value on the basis set out in the Access Procedures and the Re-contact Procedures.
Where possible, UK Biobank will conduct the assays on your behalf. In the situation where samples have to be sent to an external laboratory for measurement, all results should be returned to UK Biobank for incorporation into the Resource, prior to the full dataset being made available to you. (You will have 3 months in which to use this data before we make it available to other researchers). Read more information on the UK Biobank Biomarker Panel.
It is possible to submit a phased application, whereby you are provided with subsequent data, as and when it becomes available (e.g. health outcome data, biochemistry data, genetic data) for further phases of your research project. The initial application should clearly outline the reason for requesting these data, so that the project can be approved with the release of these future data in mind. You can submit a request for these data-fields, which will be linked to your original research project, via the usual application process.
“Costs are based on whether the dataset requires data, additional “bulk” data-fields (i.e. data that require a separate download to that of the main dataset), or samples.” Following a review of our charging procedure, there is now an initial fee at application submission, followed by a flat fee for data extraction (for non-bulk data).The UK Biobank charging policy is as follows:
£250 + VAT (where applicable) payable upon submission of an application.
£1,500 + VAT (where applicable) per application that requires access to data only.
“An additional cost of £500 + VAT (where applicable) for access to any “bulk” data files (includes MRI/ DXA/ carotid ultrasound data available from October 2015, OCT and fundus images, ECG raw data, HES raw data (i.e. spell and episode level data), genetic data, built environment data and raw accelerometer data).” Please note that the genetic data includes the genotyping data and the imputed data. These costs are subject to change; as and when more imaging data are acquired costs may be increased. We will update this page once these costs have been finalised
£bespoke quote for applications that request access to biological samples.
£bespoke quote for re-contact requests.
£bespoke quote for particularly time-consuming customisation of data sets.
In order to facilitate and encourage usage of the UK Biobank resource, there are two circumstances in which UK Biobank will consider a reduced access fee for data-only access requests.
The reduced fee is £500 in aggregate (plus VAT) – as compared to the normal fee of £2,000 in aggregate (plus VAT) – payable as to £250 on submission of the application and £250 on approval of the application.
The two relevant circumstances which may qualify for the reduced-fee regime are listed below. If you consider that you may be eligible for a reduced fee then please contact the access team firstname.lastname@example.org who can advise you appropriately.
Applications from bona fide students for the purpose of producing their thesis
Applications submitted by a student or their principal supervisor for the sole purpose of producing the student’s thesis (and the resulting paper must be authored by the student);
The application cannot be used as a means to conduct research for any other purpose nor can it be used for multiple student (or other) projects;
Any collaborators (which are permitted only at UK Biobank’s discretion) must have a clearly articulated and relevant role in the production of the thesis.
Applications from applicants who are resident in developing countries
A repeat of the baseline visit was conducted during 2012-2013 in a subset of 20,000 participants residing in the NW England area. By default, data-fields for both the baseline and repeat visit will be provided in your dataset, unless you specify otherwise in your application using the free text box in part 3 of the application. Please visit the UK Biobank Data Showcase for more information.
Measures that were taken multiple times per participant are stored as ‘array’ fields, meaning that the final dataset may contain many more individual data-fields than originally selected. Please ensure you have sufficient computing power for a successful data download (datasets containing just the baseline data can be up to 50 GB). We will inform you of the size of the dataset once you have submitted your application to use the Resource.
Use of a single genetic dataset
We have received a number of requests from institutions who would like to be able to store a single central genetic dataset, which can be linked a) between collaborators and b) for use on multiple applications from within the same institution. We support this proposal and going forward, we will release suitable bridging files to enable such linkage to take place.
It would be helpful for our administrative team if, when applying, it could be made as explicit as possible as to the precise linkage required (in terms of the pre-existing genetic dataset and the identities of the collaborators). For the avoidance of doubt, the same approach to linking datasets between different applications still applies http://www.ukbiobank.ac.uk/wp-content/uploads/2013/10/UK-Biobank-data-linkage-1.pdf
After your application is approved, it becomes a Project within UK Biobank. Every year during the lifetime of your Project, you are required to submit an annual Research Project Update Report. This provides UK Biobank with an update of the progress you are making on your approved research and any developments in your research to date. It also provides an opportunity for you to update us with any changes to be made (e.g. updates you have made to the named collaborators).
A copy of the report template can be found here: ACCESS08_A Research Project Update Report template v2. At the anniversary of your Project start date and as your project nears its scheduled completion date, you will be asked to fill in this report. We ask that you complete and upload the report (as a .pdf) even if you wish to extend the project timelines or your project has finished.
Please can you return your results (i.e. any derived data-fields and the methods, underlying code used to generate the main results, final published manuscript and details of the dataset used to generate the results) to us within 6 months of publication or within 12 months of the end of your project, whichever comes first. This is to enable other researchers to replicate or expand on the results of your research, should they wish to do so. Any derived data-fields that we incorporate directly into the resource will be done in consultation with you. More information (updated February 2017)..
You do not need our approval to publish results, although we ask that you provide a copy of any publications and notify us in writing if any results are likely to provoke controversy or attract significant public attention, at least 2 weeks before the expected date of their first public presentation or publication in any format. We ask that you acknowledge that “this research has been conducted using the UK Biobank Resource.” Researchers should also include their UK Biobank project ID number in research papers and presentations, so that it is possible to match research findings to approved research and lay summaries found on the UK Biobank website. More information about publishing your research can be found here.
UK Biobank endorses the open access policies described by the Wellcome Trust.
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 has undertaken extensive review of its policies and procedures in light of the imminent implementation of the GDPR.
It does not consider that the implementation of the GDPR will have any material impact on either existing or future research projects, in that as UK Biobank has been compliant with the previous data protection regime it will also be compliant with the new GDPR.
In due course, there may be certain incidental changes to the access procedures and the MTA, but these will be done on a prospective not a retrospective basis.
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