Researchers from the Big Data Institute will contribute to the creation of a unified, England-wide dataset that will support research into improving the health and wellbeing of children with complex surgical conditions.
The Children’s Surgery Outcome Reporting (CSOR) programme has been awarded a £3.7m investment from UK Research and Innovation’s Medical Research Council (MRC) and the National Institute for Health and Care Research (NIHR). The programme is led by researchers at Oxford Population Health’s National Perinatal Epidemiology Unit.
The CSOR programme aims to identify any differences between hospitals in the care that they provide for children who have six conditions that are likely to need an operation early in life. The programme also looks at how the care may affect the children’s health and quality of life as they get older. The findings are then used to provide hospitals with recommendations for how they can improve care for these children.
Building upon the existing CSOR programme, the new investment will be used to offer participation in the programme to all paediatric surgical hospitals in the UK. It will also be used to ensure that valuable information, such as children’s educational outcomes, clinical imaging and biochemical data are incorporated into the CSOR research database to create a globally unique, population-based resource that can support research into improving the health and wellbeing of children with complex surgical conditions.
The impact of this data resource will be demonstrated through a study of necrotising enterocolitis, a condition affecting premature infants, to improve understanding of the optimal timings of surgical interventions and how chances of survival post-operation could be improved. This resource has the potential to answer questions about a range of conditions, including Hirschsprung’s disease, gastroschisis, congenital diaphragmatic hernia and oesophageal atresia, that are currently unanswerable due to the small scale of existing datasets.
Benjamin Allin, Academic Clinical Lecturer in Paediatric Surgery at the National Perinatal Epidemiology Unit, said ‘The Children’s Surgery Outcome Reporting research database is designed to help improve how successfully children with six rare surgical conditions are treated. By working to ensure that high quality, nuanced, clinically meaningful data can be collected during routine clinical practice, this project has the potential to revolutionise the way clinicians are able to deliver evidence-based care for children in the UK.’
The CSOR investment is one of five announced today by the MRC and the NIHR to make health data more accessible through the Health Data Research Service.
Professor Patrick Chinnery, Executive Chair of the Medical Research Council, said ‘UK biomedical and health data is currently fragmented and inaccessible to many, leading to missed opportunities in generating transformative knowledge through research that will accelerate development of life-saving drugs and improve patient care. The projects announced today will bring together biomedical and health data in a number of critically important areas, such as mental health and complex surgical conditions in children, and enhance existing services, tools and standards to create a stimulating research environment that will benefit many.’
The CSOR programme is a collaboration between the National Perinatal Epidemiology Unit, paediatric surgeons, neonatologists, parents of children who have undergone early surgery, charities and support groups. The team includes collaborators from Alder Hey Children’s Hospital, UCL Great Ormond Street Institute of Child Health, University of Southampton, TOFS and CDH UK.
It is funded by the National Institute for Health and Care Research (NIHR) and the UKRI Medical Research Council (MRC), and led by Professor Marian Knight and Mr Benjamin Allin from the National Perinatal Epidemiology Unit and Professor Simon Kenny from the University of Liverpool.