When requesting data from the EPIC-Norfolk study you guarantee that you will maintain data security at all times. Data access will be limited to the declared collaborators for analyses within the stated purpose. You will not make any copies of this data or transfer to third parties. No other use of this information is permitted without first seeking further approval from the EPIC-Norfolk Management Committee (or their delegates). Any shared data is confidential and must not be disclosed to any other parties without additional approval. Please quote the Unique Identifier for your release in all subsequent correspondence.
Where data is accessed on SRCP, you guarantee that your assigned individual user account is kept confidential and not shared with anyone else under any circumstances, including collaborators listed on this request. Each individual must only use their own user account.
Removal of Machine Learning (ML) models trained on EPIC-Norfolk data from the SRCP is not permitted unless there is compelling evidence that the models do not pose a risk of individual-level data disclosure. Model performance metrics and other standard analytical outputs may be released following standard output checking. If you wish to request the removal of a trained ML model from the SRCP, we will work with you to undertake a risk assessment to determine whether this may be possible. More information can be found here: https://srcp-docs.readthedocs.io/en/latest/03-Taking-files-on-and-off-SRCP.html#machine-learning-models
The study follows participants through medical record linkage with NHS England. Data processing prior to release aggregates the data by groups of ICD codes and converts dates to tenth of year. This data is then available for requests only if the numbers in the groups are large enough. The aggregated data will be disseminated with small numbers suppressed in line with the HES analysis guide.
CONDITIONS FOR THE USE OF DATA
Datasets provided for one project should not be used for another unrelated project. Permission must be sought to continue using data in the event of any change to your institution circumstances (e.g. leaving your institution or changing institutions).
ACKNOWLEDGEMENTS
All publications must be published in line with the UKRI Open Access Policy. Please provide the EPIC-Norfolk team with a copy of any papers published on EPIC-Norfolk data and any press releases related to publications.
Please use the following when acknowledging the EPIC-Norfolk study:
“The EPIC-Norfolk study (DOI 10.22025/2019.10.105.00004) has received funding from the Medical Research Council (MR/N003284/1 MC-UU_12015/1 and MC_UU_00006/1) and Cancer Research UK (C864/A14136). The genetics work in the EPIC-Norfolk study was funded by the Medical Research Council (MC_PC_13048). This work uses data provided by patients and collected by the NHS as part of their care and support. We are grateful to all the participants who have been part of the project and to the many members of the study teams at the University of Cambridge who have enabled this research.”
DERIVED DATA
Any new derived data points generated from the approved project data must be shared with the EPIC-Norfolk study team so they can be incorporated into the study database where appropriate, and added to the EPIC-Norfolk data dictionary.
DESCRIPTION OF YOUR REQUEST ON THE STUDY WEBSITE
To reduce inadvertent duplication, information about approved data requests may be made public on the EPIC-Norfolk website. Published information will comprise the title of the proposed analysis, your name and research institution.
ADDITIONAL INFORMATION
The EPIC-Norfolk website contains a great deal of background information about the study, the data collected and details on how to contact the study team with any queries you may have.