We welcome contact from renal clinicians and other researchers who would like to access UKRR data and/or collaborate with the UKRR on grant applications.
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.
Including UKRR data in a grant application
It is not necessary to write the UKRR into a grant application to access UKRR data. However, if you are planning to include the UKRR in an application, please email us at least four to six weeks before the grant application deadline; longer if it is a complex grant.
We will ask you to complete a costing form. Quotes will be valid for up to 12 months.
If your grant application is successful we will invite you to apply for UKRR data using the process below.
Applying to access UKRR data
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):
- CKD/AKI clinical dataset
- Lab AKI dataset
- COVID-19 dataset
- CKD patient measures dataset
- UKRR NHS England quality dashboard dataset
The UKRR is also permitted to share five data items from its linked UKRR-NHSBT dataset: (1) date of transplant; (2) donor type of transplant; (3) type of transplant received; (4) cold ischaemia time, and (5) human leukocyte antigen mismatch.
If you wish to access a wider range of NHSBT data items, please see their website.
If your application includes NHSBT-derived data and their release is approved we will ask you to fill out and email us a NHSBT data release form. We will liaise with NHSBT on your behalf.
There may be a cost associated with your data request - if so, we will ask you to complete a costing form. 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 six times a year.
- If your application is approved, you will be notified within 2 weeks and we will ask you 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
