{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"submitter":["van der Scheer JW"],"funding":["National Institute for Health Research (NIHR)"],"pagination":["853-863"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC12507660"],"repository":["biostudies-literature"],"omics_type":["Unknown"],"volume":["98(3)"],"pubmed_abstract":["<h4>Background</h4>High quality data is important to understanding epidemiology and supporting improvement efforts in perinatal brain injury. It is not clear which data items relevant to brain injury are captured across UK sources of routinely collected data, nor what needs to be done to ensure that those sources are fit for purpose in improving care.<h4>Methods</h4>We reviewed data dictionaries of four main UK perinatal data sources and consulted a multi-professional group (N = 27) with expertise in neonatal/maternity care, statistics, and clinical negligence.<h4>Results</h4>None of the data sources we reviewed currently captures, on its own, the range of items relevant to brain injury. Data items lack common definitions and ongoing linkage across the different sources. Our consultation i"],"journal":["Pediatric research"],"pubmed_title":["Improving UK data on avoidable perinatal brain injury: review of data dictionaries and consultation."],"pmcid":["PMC12507660"],"funding_grant_id":["NF-SI-0617-10026"],"pubmed_authors":["Cabling ML","van der Scheer JW","Wahedally MAH","Khalil A","ABC Contributor Group","Karia AM","Cowell L","Leigh B","Iliodromiti S","Doherty C","Jolly MC","Dixon-Woods M","Fahy N","Walker J","Walsh R","Gudgeon J","Giusti A","Komolafe V","Anderson A","Harris T","Webster K","Draycott T","Gale C","van Hasselt TJ","Dewick L","Fremeaux AE","Knight M","Roehr CC","Dunn G","Steer P","Wolstenholme D"],"additional_accession":[]},"is_claimable":false,"name":"Improving UK data on avoidable perinatal brain injury: review of data dictionaries and consultation.","description":"<h4>Background</h4>High quality data is important to understanding epidemiology and supporting improvement efforts in perinatal brain injury. It is not clear which data items relevant to brain injury are captured across UK sources of routinely collected data, nor what needs to be done to ensure that those sources are fit for purpose in improving care.<h4>Methods</h4>We reviewed data dictionaries of four main UK perinatal data sources and consulted a multi-professional group (N = 27) with expertise in neonatal/maternity care, statistics, and clinical negligence.<h4>Results</h4>None of the data sources we reviewed currently captures, on its own, the range of items relevant to brain injury. Data items lack common definitions and ongoing linkage across the different sources. Our consultation i","dates":{"release":"2025-01-01T00:00:00Z","publication":"2025 Sep","modification":"2026-06-04T07:44:41.012Z","creation":"2026-05-06T03:13:25.905Z"},"accession":"S-EPMC12507660","cross_references":{"pubmed":["39885238"],"doi":["10.1038/s41390-025-03842-3"]}}