CSOR: Children’s Surgery Outcome Reporting Research Database v1.0
Research type
Research Database
IRAS ID
302622
Contact name
Marian Knight
Contact email
Research summary
CSOR: Children’s Surgery Outcome Reporting Research Database
REC name
South West - Central Bristol Research Ethics Committee
REC reference
22/SW/0130
Date of REC Opinion
10 Nov 2022
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The aim of the Children’s Surgery Outcome Reporting (CSOR) Research Database is to combine information from three different sources in order to help clinicians understand how successfully their hospitals are treating children with a range of surgical conditions. The three sources of information are: information collected directly from the child’s health record; information from nationally held routinely collected sources of data; and information collected from the child’s parents.
The first two sources of information will be collected, using automated processes, about all eligible children without seeking consent from their parents. This collection and utilisation will be conducted under Confidentiality Advisory Group (CAG) section 251 approvals in England [insert reference] and equivalent Public Benefit and Privacy Panel for Health and Social Care (PBPP) approvals in Scotland [insert reference] under the legal principle of conducting research in the public interest. Parents of all eligible children will however also be invited to provide, via a web-based portal, information relating to their child’s quality of life.
All data collected for the CSOR Research Database will be stored securely at Oxford University Hospitals NHS Foundation Trust and the University of Oxford, and confidentiality will be maintained.
Research programme
Half a million children in England and Wales undergo surgery each year. In 2011, the National Confidential Enquiry into Patient Outcomes and Death (NCEPOD) review of children's surgery in the UK concluded there was room to improve the care that was delivered for these children. The CSOR research database is designed to provide a resource which can both act as a source of data for conducting high quality research into a range of childhood surgical conditions, and also to help hospitals understand whether the outcomes they are delivering for children with surgical conditions are better or worse than would be expected based upon the characteristics of the children they have treated. The data that are stored will be used to conduct research which falls within the scope of improving the care that is delivered to children with surgical conditions. In the first instance, this will focus on children with six conditions, oesophageal atresia, Hirschsprung’s disease, gastroschisis, posterior urethral valves, congenital diaphragmatic hernia and necrotising enterocolitis. In the future, it is anticipated that other conditions will be added to the database.
Research database title
CSOR: Children’s Surgery Outcome Reporting Research Database
Establishment organisation
National Perinatal Epidemiology Unit, University of Oxford
Establishment organisation address
Nuffield Department of Population Health, Richard Doll, Old Road Campus
Roosevelt Drive, Headington
Oxford
OX3 7LF