Applying to UK Biobank and accessing data - FAQ

  • Updated

This document contains answers to FAQs from researchers relating to applying to UK Biobank and accessing data.

Registration

  • You can add all your current affiliations to a single registration in AMS, listing your personal institute email address for each of them.

  • The Resource is available to all bona fide researchers for all types of health-related research which is in the public interest.

  • There is no cost to register.

  • If the mandatory fields have been completed please contact the Access Management Team for assistance.

  • No. The email address used to register must be your personal institute email address.

  • We aim to review all registrations within 10 working days, but this may be longer if additional information is required.

  • Follow the process for “What happens if I forget my password?” below.

  • Click the ‘Forgot your password?’ link on the AMS Log in Page. Enter your username and the system will send you an email with a reset password link.

  • Yes. You can use the ‘Human Icon’ button at the top right corner of the Home Page after logging into AMS – select ‘Change password’.

  • No. You can click Profile after logging in to AMS to change the details in your registration. You can add or edit institute details.

  • Contact details can be updated via the ‘Profile’ tab on your AMS Home Page. Your email address is set as your User Name by default. If you change institute you can add details of your new institute (including your personal institute email address) in your Profile tab.

Applications

  • Yes. UK Biobank is happy to respond to general questions, such as whether a research project is feasible using the resource, although in some cases an application is required to answer specific queries.

  • No.

  • No. The Resource is available to all bona fide researchers regardless of their location.

  • No. Researchers need to apply on their own behalf. If you submit an application you automatically become the Applicant PI and are required to sign the Material Transfer Agreement (MTA).

  • You need to list all researchers who will have direct access to the UK Biobank data. Researchers who are involved in a project (e.g., as co-authors on publications) but will not access the data do not need to be named on the application.

  • Yes. Collaborators listed in an application can be added or removed by the Applicant PI.

  • Yes. Please add the new Institute to the Profile tab on your AMS Home Page. The Access Management Team will need to verify any new Institute added.

  • Yes. Please contact the Access Management Team for guidance. The proposed new Applicant PI must be registered with UK Biobank, named on the application and a new MTA will need to be executed.

  • Application Form tab:

    • A1: Project title (200 characters)
    • A2: A brief lay summary of the research you intend to undertake (4000 characters)
    • A3: Up to six keywords that describe the intended research
    • A4a: Confirmation that you intend to conduct health-related research
    • A4b: Confirmation that you intend to use UK Biobank data to perform research in the public interest
    • A5a: Is your intended research output potentially considered contentious?
    • A6: Declaration of conflicts of interest (2000 characters)
    • B1: Selection of data tier

    Collaborators tab:

    • Please select Institute where you will be conducting the project
    • Add collaborators at your institute - only researchers who are already registered and approved can be added
    • Add collaborators at another institute
    • Materials Transfer Agreement information:
      • Institute name to appear on legal document
      • Select contact at this Institute
  • No. Although the request must be appropriate to your application.

  • Please contact the Access Management Team to discuss your re-contact request.

  • UK Biobank offers a reduced data-only access fee of £500 (+VAT) for student researchers. This discounted rate is available exclusively for applications submitted by a student or their supervisor and must only be used to support the student’s individual research project (i.e. it cannot be used for multiple student projects or for broader purposes). The resulting publication(s) must be authored by the student. Student researchers are defined as researchers who are working towards an academic qualification (BSc, MSc, MD, PhD etc.). Post-doctoral researchers and those in full-time employment do not qualify for this reduced fee. It is a requirement for both the student and their supervisor to be listed on the application. In the case where the student is Principle Investigator, please ensure to add your supervisor to the application. You will not qualify for the reduced student fee without completing this step. Please ask your supervisor to submit a registration in AMS. Once their registration is approved, you can add them as a collaborator by following steps in Section 1.3 of the Application Guide. If you are the supervisor applying on behalf of a student, please ensure to add your student as a collaborator to the application to qualify for the reduced student fee. The MTA and reduced payment request required to proceed with the application will not be raised until both the student and their supervisor are listed correctly.

  • The MTA contact should be someone different to the PI/Lead Collaborator and must be authorised to sign legally binding documents on behalf of your institute. If you are unsure who has the authority to sign the MTA, please discuss this with your institute.

  • You should use the ‘Select a contact at this institute’ dropdown list to add an MTA contact for each institute listed on your application. If the MTA contact you wish to add is not present in the dropdown list, you can add new MTA contact by clicking ‘Add contact’. Another screen will open where you can complete the new MTA contact details. When you have finished click on the ‘Add’ button. If you add new MTA contact details, please provide an email address which is specific to the institute. We cannot accept an email address with a public domain.

  • UK Biobank will only send Material Transfer Agreements (MTA) via DocuSign and we will only accept MTA’s which are signed in DocuSign.This is non-negotiable.

  • If you have not received your Material Transfer Agreement (MTA) please check in the Access Management System (AMS) that you have provided your institutes MTA contact details on the application. Without these details we are unable to send the MTA via DocuSign. The MTA contact should be someone different to the Principal Investigator/Lead Collaborator and should be authorised to sign legally binding documents on behalf of the institute. Please send a message via the application in AMS to confirm you have updated these details.

  • The Materials Transfer Agreement (MTA) is a contract between UK Biobank and the Applicant Institute that outlines the commitments of the Institute. For the most current version of the MTA for data only access, please click here

  • To grant data access, we require a fully signed and executed Material Transfer Agreement (MTA) for the Applicant institute, including each named collaborating institute on the project, and payment for the invoice. For more information, please see our MTA process user guide. If you still need to pay the fee, please see our Paying a Fee user guide. Our Access Team will communicate with the Principal Investigator (PI) through the Access Management System (AMS) to notify when the MTA has been executed and data access has been granted.

  • To change the signers, please follow the steps below :

    1. After opening the documents, in the top menu, select Other Actions Assign to Someone Else.
    2. Enter the new signer's email address, name, and a reason for changing the signing responsibility.
    3. When you're finished, select Assign to Someone else.
    To add a signer/recipient, please click the ‘+Add Recipient’ button after opening the document. You will need to provide their full name and email address. You can also select their privileges, i.e. to sign, to view, or to receive a copy. Please note: The Material Transfer Agreement (MTA) must be signed by the applicant Principal Investigator of the project and/or named Lead Collaborator and the associated MTA contact from each named institute on the project.

     

  • Please ensure that firewall permissions for your organisation are configured to accept emails from this domain - @eumail.docusign.net. Please message the Access Team in the Access Management System on the application and request for the DocuSign link to be resent. Material Transfer Agreements (MTA) will only be sent to the Applicant Principal Investigator and named Lead Collaborators and the associated MTA contacts for each institute on the project.

  • The Access Management Team escalates all applications for review by our epidemiologists within 10 working days of submission. We will respond with their feedback as soon as possible.

  • Yes. You have the right to request reconsideration. Requests must be submitted in writing within 3 months of the Application being declined, and will be placed before the Access Committee (AC) which will review your appeal at its next quarterly meeting.

Payment

  • Please see our costs page for more information.

  • The Application fee can be paid online by the Applicant PI or you can generate and download
    an invoice and arrange to pay by BACS.

  • Payment can be made via our online payment system in the Access Management System (AMS) or via a BACS transfer from your institute. If making payment via a BACS transfer, you will need to generate an invoice in AMS. Please note: All payments must be made in GBP. The applicant institute or the applicant PI named on the MTA must make payment. Payment must be made in one single transaction. Please note that UK Biobank’s policy is not to complete supplier forms. Step by step guidance can be found in the payments User Guide.

  • UK Biobank is obliged to charge VAT on access charges to UK-based institutions. See our VAT note for information.

  • Payments must be in pounds sterling (GBP) taking bank charges into account.

Approval, Licensing and Ethics

  • Not usually. UK Biobank has obtained Research Tissue Bank (RTB) approval from its ethics
    committee that covers the majority of proposed uses of the Resource, so researchers do not
    typically need to obtain separate ethics approval. Read more about completing an access application.

  • The REC reference for UK Biobank is 16/NW/0274.

  • Yes. Requests for re-contact require separate approval from a Research Ethics Committee.

  • UK Biobank possesses a HTA Licence, so a separate licence is not required by researchers
    who receive samples from the Resource, provided that:

    • Residual samples are destroyed or returned at the end of the project; and
    • Applicants do not transfer samples to a third party without prior UK Biobank approval.

Property Rights

  • UK Biobank is the owner of the Intellectual Property Rights of the data and samples contained in the Resource. Successful applicants are granted a limited, revocable, worldwide, royalty-free, non-exclusive licence (but not ownership rights) to use samples for a permitted purpose only.

    Subject to the licence-back provisions set out in the Access Procedures, the Intellectual Property Rights in the Results Data deriving from use of the Resource for the permitted purpose will belong to the Applicant.

  • UK Biobank will remain the owner of the data and samples, but will have no financial claim over any inventions that are developed by researchers as a result of accessing the Resource (unless they are used to restrict health-related research or access to healthcare unreasonably).

    UK Biobank will require a copy of any patents whose claims cover, or are intended to cover, an Applicant Generated Invention* within two months of their publication.

    * Applicant-Generated Invention: an invention developed by the Applicant as a result of
    carrying out the Approved Research Project.

  • UK Biobank is a research resource not a research institute. UK Biobank’s purpose is described in the Ethics and Governance Framework as to: “build a major resource that can support a diverse range of research intended to improve the prevention, diagnosis and treatment of illness and the promotion of health throughout society”.

Data and/or Sample release and additional requests

  • Access will be granted when:

    • UK Biobank has formally approved the Application;
    • All charges have been paid in full;
    • A Material Transfer Agreement has been signed and returned then executed by UK
      Biobank.
  • It takes an average of 15 weeks from application submission to data release. Please see our Application user guide for further information.

  • UK Biobank’s policy for the assay of depletable biological samples is that the sample should be efficiently turned into non-depletable data. If you are submitting an application to request biological samples please ensure your application meets our Sample Release Policy, then complete and return a PMG103_B form to the Access Team via email. UK Biobank are undertaking a full replacement of our infrastructure, which limits capacity to deliver samples for the next few years. After 2026, capacity should be significantly increased and the cost of sample supply will be reviewed. Projects requiring access to samples are individually costed once all the details are confirmed.

  • No. The MTA is non-negotiable. It has been designed and written by UK Biobank in collaboration with funders, stakeholders and the independent UK Biobank Ethics & Governance Council. It does not seek to apply punitive restrictions on researchers but must safeguard the Resource and the data participants have provided.

  • Data/sample use is granted for an initial period of 36 months. Usage is for the duration of the project. Reasonable extension requests made in AMS will be considered by UK Biobank. Extensions are subject to a charge.

  • You can request to change to a higher data tier in the Requests tab of your project. Charges will apply to any project moving to a higher tier.

  • A dataset must only be used to conduct research which has been approved. Further research may require a separate application to the Resource. Please contact the Access Management Team for guidance.

  • Each dataset is provided with a unique participant identifier so that researchers cannot link their datasets. Researchers are also obliged to NOT seek to identify participants, as stipulated in the signed MTA. Penalties may be imposed on researchers and / or their institutes who seek to do this.

  • Unfortunately, UK Biobank is unable to complete supplier set up forms or supplier questionnaires issued by researcher institutions. As a small not-for-profit organisation, we do not have the resources to complete potentially thousands of individual supplier forms or questionnaires. However, there are a lot of publicly available information on our website which may assist a researcher or institution to complete such forms or questionnaires themselves. Company/charity information and employee and environmental information can be found in our Annual Accounts/Financial Statements. Data protection information can be found in the Data Protection FAQs. Modern slavery, bullying/harassment, whistleblowing and anti-bribery and corruption information.

Publications and return of results

  • Yes. You are obliged to publish your findings in a peer-reviewed journal or on an open source publication site.

  • Yes. For information of the acknowledgements required by UK Biobank and by our data linkage providers please click here.

  • Yes. Please provide all written reports (e.g. meeting abstracts, on-line reports, publications) to UK Biobank via AMS or email at least 2 weeks before their expected public release date. This is solely for tracking how results are being disseminated (our approval is not required) and to provide general information to participants who have provided samples and data.

  • Yes. Please let us know if you think a report is likely to provoke controversy or attract significant public attention, so we can be prepared for possible media enquiries and, when necessary, inform participants.

  • Please contact the Access Team for approval to reproduce images in a manuscript. If permission is granted, please include the caption “Reproduced by kind permission of UK Biobank”.

  • You must return your results to UK Biobank (i.e. the final analytical dataset plus statistical methods and tools used to create any derived data-fields). Please also tell us which, if any, derived data might be useful to share with other researchers so we can incorporate them into the Resource. Please see our Return of Results User Guide for further information.

  • Yes. The UK Biobank website provides information about all approved Applications in and remains in touch with participants via its newsletter and participant events.

Complaints and feedback

  • A complaint form is available from UK Biobank. Please submit a request and UK Biobank will respond within 3 working days.

  • UK Biobank welcomes feedback from researchers. The Access Management Team seeks feedback after registration approval and at certain points in the application process. Researchers can also submit feedback by emailing access@ukbiobank.ac.uk.

Useful Information

  • If you are registered with UK Biobank the best way to get guidance and support is through the UK Biobank Community. If you can't find what you need, you can submit a request via the link at the top of the page.

    Our postal address is: UK Biobank Coordinating Centre, Units 1-4 Spectrum Way, Adswood, Stockport, Cheshire, SK3 0SA, United Kingdom.

  • Yes. You have the right to request a copy of the information UK Biobank holds about you and can request to have any inaccuracies in the information corrected. Any such requests should be made in writing to UK Biobank or by submitting a request.

 

If you need additional guidance or support please browse our training, visit the forum, or submit a ticket.

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