Your data
How we use and protect your data
Information about kidney care helps us understand how treatments are working and where improvements are needed.
The UK Renal Registry (UKRR), part of the UK Kidney Association, brings together information from kidney centres and hospital laboratories. We use it to assess care against national standards, compare outcomes and support research.
Looking at information over time helps us understand differences in care between centres and groups of patients. Our findings help kidney teams identify where changes could improve care.
What information does the UKRR collect?
Kidney centres and hospital laboratories provide information about kidney conditions, treatments and test results.
Some personal details are needed to match records accurately and follow care over time. Our patient privacy notice explains what information we collect, how it is used and the choices available to you.
How we protect your information
We store patient information securely and restrict access to authorised staff.
Researchers must apply to use UKRR data. Any approved research extracts have identifying details, such as names and NHS numbers, replaced with a code. This is called pseudonymisation and helps protect people’s identities.
Our published reports present findings about groups of people rather than identifiable patient records.
Patients help decide how data is used
Members of our Patient Council help review applications to use UKRR data for research. Applicants must address the patient representatives’ questions and concerns before their use of the data can be approved.
This gives people with experience of kidney disease a direct role in decisions about research using patient information.