Guidance note to invite proposals for enhancements
UK Biobank is conducting a range of phenotyping assessments in large subsets of participants (e.g., physical activity monitoring, imaging). We welcome proposals from researchers as to what other information could be collected on the cohort via web-based questionnaires or remote monitoring devices in the future.
Web-based questionnaires: We are sending a series of web-based questionnaires to participants for whom we have an email address (currently ~340,000). Such questionnaires focus on the collection of new or more detailed exposure data for which longitudinal repeats are important (e.g., diet, cognitive function) or that collect information on health outcomes that are not available easily via linkage to electronic health records (e.g., pain, mental health).
We plan to send web-based questionnaires approximately every nine months (some of which may be new; some may be repeated at regular intervals) and their release will be carefully managed to avoid overburdening participants.
Below is an outline of the topic content and schedule of web-based questionnaires:
|Date administered||Content of questionnaire||Collaborators|
|2011 – 2012||24 hour dietary recall questionnaire, (administered on 4 occasions)||Prof Valerie Beral (Oxford University)|
|2014 – 2015||Mood and cognitive function||UK Biobank cognitive neuroscience expert working group (Prof John Gallacher; Oxford University)|
|2015||Occupational history||Dr Lesley Rushton, Dr Paul Cullinan, and Dr Sara Mattias (Imperial College London)|
|2016||Mental Health||UK Biobank mental health outcomes expert working group (Prof Matthew Hotopf; Kings College London), Dr Miles Parkes; Addenbrookes Hospital Cambridge, Prof Peter Whorwell; Manchester University|
|2018||Digestive Health||Dr Miles Parkes (Addenbrookes Hospital, Cambridge)|
Topics for future questionnaires include pain, quality of life, sleep outcomes, as well as a repeat of the 24-hr dietary recall and cognitive function questionnaires.
Remote monitoring devices and other enhancements: We have collected 7-day physical activity data on 100,000 participants and have plans to collect data on heart rhythm using a remote heart monitoring device (provided to participants who attend the imaging clinic), subject to funding.
Proposing an enhancement
Please get in touch with us by emailing email@example.com if you would like to submit a proposal to re-contact participants in order to collect new information via administration of a web-based questionnaire or a remote monitoring device.
Proposals should include the following:
- A strong scientific rationale for use in the UK Biobank population (e.g., giving consideration to the age range of the cohort, likely prevalence of the expected exposure/outcome you wish to measure; ability for prospective and repeated evaluation; examples of the range of research questions this measure will uniquely help to address, etc.)
- Published evidence of the validity and reliability of the measure in population-based research settings.
- A detailed specification of the content of the questionnaire/device and what is expected of the participant (e.g., time taken to complete questionnaire, special requirements or exclusions).
- Results from pilot data, if available.
The proposal should be submitted to us directly (i.e. they should not be included as part as a research application to use the resource). The decision to implement these proposals is based on scientific merit and will be taken by UK Biobank, with advice from the Steering Committee and others, where appropriate. Please note that, should such proposals be approved, they will need to be scheduled in with our planned activities (outlined above).