LAUSR

The UK Renal Registry (UKRR) was established by the Renal Association in 1995 with the primary aim of collating data centrally from all adult UK renal centres to improve the care of patients with end stage renal disease (ESRD). Although originally limited to patients on renal replacement therapies (RRT) – dialysis treatments and kidney transplant recipients – the UKRR has now started to collect all cases of acute kidney injury (AKI) in primary and secondary care and all cases of advanced chronic kidney disease (CKD) in secondary care not on dialysis. This will greatly improve understanding of how patients progress to ESRD. Children on RRT were initially captured by a separate registry established by the British Association for Paediatric Nephrology, but this activity passed over to the UKRR from 2009. The Bristol-based UKRR team of 18 data analysts, systems developers, statisticians and researchers manage data collection, analysis and reporting on approximately 8,000 new patients and 63,000 existing patients on RRT each year. A regionally based team of six project managers and administrators deliver the three main Think Kidneys programmes as described in the Improvements and innovations in patient care section below. The UKRR has an active and involved patient council of approximately 15 members who meet with representatives of the UKRR team four times a year in Birmingham. They discuss issues of importance to patients, such as clearer communication of the UKRR’s work, how personal data are handled securely and ideas for research projects. A recent outcome is that plain English summaries of annual report chapters are now available on the UKRR website (https://www.renalreg.org/) and accompanying infographics are being developed. The UKRR has entered an exciting phase with the development of clinical informatics and data now used not only for audit purposes, but also for randomised controlled trials and quality improvement and innovation in patient care.