Half a million children undergo surgery in the UK each year, yet for many rare conditions doctors lack robust evidence on which treatments work best. The problem is a data gap. Individual complex conditions—such as necrotising enterocolitis, which kills 30–40% of babies who need surgery for it—affect only a few hundred children annually. To gather enough cases for meaningful research, studies must run for years and track every child treated nationwide. Currently, pulling that data from hospital systems is slow, inconsistent, and burdens clinicians. This project builds on an existing database across nine English hospitals that automatically extracts detailed clinical information without extra work for staff. The team will move this system into a regional NHS secure data environment, expand it to include lab results, long-term outcomes, and educational attainment, and recruit more hospitals toward national coverage. A pilot study on necrotising enterocolitis will test the infrastructure while addressing a priority clinical question: when to operate to improve survival. If successful, the work will create a national, NHS-controlled resource that makes high-quality children’s surgical data available for analysis at scale—enabling the kind of translational research that can finally guide treatment decisions for the most vulnerable patients.
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Every year, approximately 500,000 children undergo an operation in the UK. The long-term health and wellbeing of children with complex surgical conditions is affected by the need for repeated operations, functional problems, e.g. incontinence, and multiple admissions to hospital. There is little robust evidence to guide the treatment of these children, and an urgent need for high-quality research to support decision-making and improve outcomes. Currently, it is hard to obtain the data needed for this research. Although collectively responsible for a significant burden of disease, individual complex surgical conditions are uncommon, with incidences between 1:50000 and 1:3000 births (14 to 235 new diagnoses/year in the UK). To collect enough data to answer important clinical questions about how to treat these children, it is necessary to run studies over many years, and to follow all children treated across the entire country. The Children’s Surgery Outcome Reporting (CSOR) research database has been developed over the past five years across nine English hospitals. It draws data from the clinical systems within each hospital, allowing the collection of large volumes of detailed information without additional burden upon healthcare professionals. These systems have been updated where necessary to ensure that the data, which is needed for care as well as for research, is recorded to appropriate standards. Collected data are linked to parent-proxy reported quality of life data. This is the kind of infrastructure development needed to enable high-value translational research across the network of NHS secure data environments (SDEs): data is drawn directly from hospital systems; engagement with the clinical setting ensures that the data is properly understood; systems and data practices are updated, based upon that understanding, to address important gaps or shortcomings in the data; high-quality, detailed data can be made available for analysis, at scale, without the need for the data to leave the NHS. This project will build upon the success of the existing database to develop a valuable, national resource integrated within the emerging network of SDEs. It will widen the scope to include additional data on background, physiological status, laboratory/radiological results, long-term outcomes, and educational attainment, and increase the value of data through the development of a core data model aligned with and linked to clinical and research data standards. It will collect data from and build engagement with additional hospitals, working towards complete national coverage. It will move the database from its current location within a university department into a regional NHS SDE. This will facilitate the transfer of detailed data from NHS systems and allow the data to be made more widely available for analysis while remaining under NHS control, within the SDE and through the NHS England National Consultant Information Portal. It will also help ensure that the development and operation of NHS SDEs is informed by the requirements of high-value translational research. To help drive development, we will carry out a research study as part of the project, focussed upon Necrotising Enterocolitis: a condition that affects mainly premature infants and has been identified as a priority area for improving outcomes. 30-40% of babies needing an operation for necrotising enterocolitis will die before they reach one year of age; many others suffer lifetime chronic health conditions. The data collected will improve our understanding of when to operate and how to improve the chances of survival.
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