University of Brisstol Medical School, UKRR

ILD160

In England in 2020, one in 45 babies was delivered with a congenital anomaly. Congenital anomalies are conditions present at delivery which develop before birth. These include structural problems such as cardiac or kidney abnormalities and genetic disorders. Congenital anomalies of the kidneys and urinary tract account for the third most common type of congenital anomaly seen among births in England. It is not known how many children born with congenital anomalies then go on to develop kidney problems during their lifetime. We know that children with congenital kidney problems account for a high proportion of patients with chronic kidney disease; of the children who develop kidney failure needing dialysis or transplant in the UK, half will have an underlying congenital kidney or urinary tract problem. Children with other congenital problems, such as cardiac conditions, may also be at risk of developing kidney injury. Studies to date examining kidney outcomes in children with congenital anomalies have looked at small groups of patients but none have been nationally representative. This study will link UK Renal Registry data for people of all ages who experience an acute kidney injury (AKI) episode or require kidney replacement therapy (KRT), with congenital anomaly data from the National Congenital Anomaly and Rare Disease Registration Service. We estimate that there will be over 1000 patients in this linked dataset. This will enable us to look at kidney outcomes for children with identified congenital conditions in England. We will also use this linked data to look at adults with no known cause for their kidney failure, to see whether a previous congenital problem was diagnosed. Other objectives of this study are to determine risk factors for kidney disease among patients with congenital anomalies, and to quantify the health-economic cost of progression to kidney failure for this population. This will be the first study to link two nationally representative datasets to examine the national history, progression, and long-term outcomes of children with congenital anomalies. We intend to share the findings of this work with patient groups, the British Association for Paediatric Nephrology, the UK Kidney Association and organisations involved in service planning and policy development such as NHS England. We also intend to co-design a patient-facing summary of findings to share with children, young people, and families.