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.
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.
Aggregate level (anonymised) 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
You 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
To access patient level data:
- Submit an expression of interest (EoI) to ukrr-research@ukkidney.org.
- The EoI will be reviewed by our Data Review Group and you will be notified of the outcome within two weeks.
- If your EoI is approved you will be invited to submit a full application form and data protection impact assessment (DPIA) for assessment at the next available UKRR Data Review Group meeting. Applications need to be received at least four weeks in advance of a meeting. If an application is received any closer than four weeks in advance it may not be assessed until the following meeting.
- You will be notified of the outcome of your application and provided with any feedback within two weeks of the meeting.
- If your application is approved, we will invite you to a meeting to discuss next steps and timelines. We will ask you to sign a data sharing agreement prior to the release of any data.
Contact us if you have any queries.
Forthcoming Data Review Group meeting dates are:
- 26/06/2024
- 28/08/2024
- 23/10/2024
- 18/12/2024
