Parents of children born with congenital anomalies currently have no way of knowing whether their child will develop kidney disease, and doctors lack data to decide which children need monitoring. This fellowship will link two national registries—the National Congenital Anomaly and Rare Disease Registration Service and the UK Renal Registry—with hospital and mortality records to track kidney outcomes in these children over time. The problem is that kidney disease is a major cause of illness and death in children with congenital anomalies, yet no systematic evidence exists to guide surveillance or early treatment. Without data, clinicians cannot identify which children are at risk of acute kidney injury or progression to kidney failure, and families cannot receive informed counselling. If successful, this research will produce the first evidence-based criteria for targeted kidney monitoring in this population. That could allow early interventions—such as medications or timely referral for transplantation—to slow disease progression and reduce the number of children who reach kidney failure. It will also tell the NHS whether such surveillance is cost-effective, helping allocate resources efficiently. The findings will directly inform NICE guidelines and NHS England policy, and will be shared with families through co-produced summaries.
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Background Children with congenital anomalies are at risk of complex and multiple long-term conditions. This includes kidney disease, which is a significant health burden associated with high morbidity and mortality during a critical period of development. Early detection of kidney disease is a public health priority. It permits interventions to slow disease progression and timely access to cost-effective, best-practice treatments including kidney transplantation. Currently, parents of children with congenital anomalies do not know what the risks of acute and chronic kidney disease are for their children. For health professionals, there are no data to inform which children should be monitored to detect and manage kidney complications. Aim This Fellowship will use epidemiological and data science methods to investigate the long-term kidney outcomes of children with congenital anomalies and determine whether targeted surveillance of this cohort is likely to represent cost-effective use of NHS resources. This will be achieved using a novel linked dataset comprising two nationally representative registries, the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) and the UK Renal Registry, and administrative health datasets (Hospital Episode Statistics, Office for National Statistics). Methods and timelines This research consists of four objectives. Each addresses a key research question: What is the burden of kidney disease for children with congenital anomalies and are there inequalities in accessing specialist kidney care? Objective 1 will describe the epidemiology of kidney disease and access to specialist kidney or urological care and interventions. Months 0-24. Which children with congenital anomalies develop acute kidney injury (AKI) and does this influence progression to kidney failure or survival? Objective 2 is a cohort study nested within the linked dataset to examine the risk of AKI and, in those who develop AKI, model outcomes such as death, AKI progression and hospitalisation. Months 18-36. Can we identify which children with congenital anomalies are at risk of progression to kidney failure? Objective 3 will use epidemiological modelling and supervised machine learning approaches to generate clinically relevant phenotypes of kidney disease progression. Months 30-48. What is the economic cost of i) progression to kidney failure and ii) testing and surveillance monitoring for children at risk of chronic kidney disease for this cohort? Findings from objectives 1-3 will inform economic modelling of individuals who progress to kidney failure and the potential cost-effectiveness of a kidney surveillance intervention. Months 42-60. Anticipated impact and dissemination Identifying children at risk of kidney disease supports service provision planning while early intervention will reduce the incidence of kidney failure. Most importantly for young people and families steering this project, it will support professionals to provide informed counselling to families throughout childhood and beyond. This study will inform policy by providing evidence for which children should be tested for CKD, addressing a priority research gap for the National Institute for Health and Care Excellence. Findings will be shared with NHS England and the UK Kidney Association, published in peer-reviewed journals, and shared with families using co-produced summaries by parent and patient representatives.
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