The UKRR is permitted to share the following datasets for audit and research - either at an aggregate level (anonymised) or at an individual patient level (pseudonymised):
Please note, the UKRR is only allowed to release patient-level data to academic and clinical organisations in the UK, the European Economic Area (EEA) and Switzerland – we cannot release patient level data to any commercial organisations. The UKRR may, by exception, accept applications from outside this geographical area, but will only share data with organisations in countries that have data protection laws equivalent to the GDPR.
The UKRR is also permitted to share five data items from its linked UKRR-NHSBT dataset – date of transplant, donor type of transplant, type of transplant received, cold ischaemia time and human leukocyte antigen mismatch. If your application includes NHSBT-derived data and their release is approved we will ask you to fill out the NHSBT data release form – please return this to us by email and we will liaise with NHSBT on your behalf. If you wish to access a wider range of NHSBT data items see their website.
There may be a cost associated with your data request - if so, we will ask you to complete a costing form and the quote will be valid for up to 12 months.
Aggregate level data
Aggregate data include tables and graphs based on statistical analyses. To access aggregate data complete the application form and return it to ukrr-research@ukkidney.org
We accept applications for aggregate data throughout the year. Applicants will be notified of the UKRR’s decision within two weeks.
If your request is approved, the delivery of the data will require at least a further two weeks.
Patient-level (pseudonymised) data
Please see the flow diagram for a summary of how to apply to access individual patient-level data. The main steps in the process are:
- Submit an expression of interest (EoI) at any time.
- If your EoI is approved you will be invited to submit a full application form and data protection impact assessment (DPIA) at least 4 weeks prior to a Data Release Group (DRG) meeting.
- Your application and associated DPIA will be assessed at the UKRR’s DRG which meets quarterly.
- If your application is approved you will be notified within 2 weeks and you will have to complete a data-sharing agreement prior to the release of any data.
Contact us if you have any queries. Forthcoming DRG meeting dates are:
- 28/02/2024
- 24/04/2024
- 26/06/2024
- 28/08/2024
- 23/10/2024
- 18/12/2024
