Evidence map›Paper›PMID 39885238›Full record

ReviewPediatric research2025

Improving UK data on avoidable perinatal brain injury: review of data dictionaries and consultation.

Jan W van der Scheer, Victoria Komolafe, Kirstin Webster, Stamatina Iliodromiti, Charles C Roehr, Asma Khalil, Tim Draycott, Louise Dewick, George Dunn, Rachel Walsh and 6 more

Erratum issuedAbstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Pediatric research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

16 authors.

Jan W van der ScheerTHIS Institute (The Healthcare Improvement Studies Institute), University of Cambridge, Strangeways Research Laboratory, Cambridge, CB1 8RN, UK. jan.vanderscheer@thisinstitute.cam.ac.uk.
Victoria KomolafeRoyal College of Midwives, 10-18 Union Street, London, SE1 1SZ, UK.
Kirstin WebsterRoyal College of Obstetricians & Gynaecologists, 10-18 Union Street, London, SE1 1SZ, UK.
Stamatina IliodromitiWomen's Health Research Unit, Wolfson Institute of Population Health, Queen Mary University London, London, UK.
Charles C RoehrUniversity of Bristol, Faculty of Health Sciences, Bristol, UK.
Asma KhalilRoyal College of Obstetricians & Gynaecologists, 10-18 Union Street, London, SE1 1SZ, UK.
Tim DraycottRoyal College of Obstetricians & Gynaecologists, 10-18 Union Street, London, SE1 1SZ, UK.
Louise DewickRoyal College of Obstetricians & Gynaecologists, 10-18 Union Street, London, SE1 1SZ, UK.
George DunnRoyal College of Obstetricians & Gynaecologists, 10-18 Union Street, London, SE1 1SZ, UK.
Rachel WalshNHS Resolution, E14 4PU, London, UK.
Philip SteerRoyal College of Obstetricians & Gynaecologists, 10-18 Union Street, London, SE1 1SZ, UK.
Alessandra GiustiTHIS Institute (The Healthcare Improvement Studies Institute), University of Cambridge, Strangeways Research Laboratory, Cambridge, CB1 8RN, UK.
Mark L CablingRAND Europe, Westbrook Centre Milton Road, Cambridge, CB4 1YG, UK.
Nick FahyRAND Europe, Westbrook Centre Milton Road, Cambridge, CB4 1YG, UK.
ABC Contributor Group
Mary Dixon-WoodsTHIS Institute (The Healthcare Improvement Studies Institute), University of Cambridge, Strangeways Research Laboratory, Cambridge, CB1 8RN, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundHigh 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.

methodsWe 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.

resultsNone 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 identified the need for standardising the definition of avoidable perinatal brain injury, resolving inconsistencies in capturing data, improving linkage of data across existing data sources, and co-designing a strategy for meaningful use of data.

conclusionsLimited standardisation and linkage across UK data sources are key problems in using data to guide improvement efforts aimed at reducing risk of avoidable perinatal brain injury. A programme involving co-design with healthcare professionals and families to improve capture and use of data is now needed. IMPACT: Limited standardisation and linkage across UK data sources currently challenge the use of data as the basis of efforts to reduce risk of avoidable perinatal brain injury. A harmonisation programme involving consultation and co-design with healthcare professionals, families, and other specialists is needed to enable better capture and use of data in this key area. There is need to standardise the definition of avoidable perinatal brain injury, resolve inconsistencies in capturing data, improve linkage of data collected across existing data sources, and co-design a strategy for meaningful use of data.

Indexed as

Brain InjuriesFemaleHumansInfant, NewbornPregnancyUnited Kingdom

Identifiers

PMID39885238
PMCPMC12507660

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.