Evidence map›Paper›PMID 39966337›Full record

ArticlePaediatric and perinatal epidemiology2025

Improving Register Ascertainment of Children With Post-Neonatally Acquired Cerebral Palsy Through Health Service Partnerships.

Emma Waight, Adrienne Epps, Hayley Smithers-Sheedy, Shona Goldsmith, Sue Woolfenden, Simon Paget, Kerry Hanns, Kylie French, Heather Burnett, Anna Ward and 7 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Paediatric and perinatal epidemiology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Emma WaightCerebral Palsy Alliance/Research Institute, Specialty of Child & Adolescent Health, the University of Sydney, Camperdown, New South Wales, Australia.ORCID https://orcid.org/0000-0002-8027-6183
Adrienne EppsRehab2Kids, Sydney Children's Hospital, Sydney Children's Hospital Network, Randwick, New South Wales, Australia.
Hayley Smithers-SheedyCerebral Palsy Alliance/Research Institute, Specialty of Child & Adolescent Health, the University of Sydney, Camperdown, New South Wales, Australia.
Shona GoldsmithCerebral Palsy Alliance/Research Institute, Specialty of Child & Adolescent Health, the University of Sydney, Camperdown, New South Wales, Australia.
Sue WoolfendenCentral Clinical School, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia.
Simon PagetThe Children's Hospital at Westmead, Sydney Children's Hospitals Network, Westmead, New South Wales, Australia.
Kerry HannsRehab2Kids, Sydney Children's Hospital, Sydney Children's Hospital Network, Randwick, New South Wales, Australia.
Kylie FrenchRehab2Kids, Sydney Children's Hospital, Sydney Children's Hospital Network, Randwick, New South Wales, Australia.
Heather BurnettHNEkidsRehab, John Hunter Children's Hospital, New Lambton Heights, New South Wales, Australia.
Anna WardRehab2Kids, Sydney Children's Hospital, Sydney Children's Hospital Network, Randwick, New South Wales, Australia.
Amy ShawHNEkidsRehab, John Hunter Children's Hospital, New Lambton Heights, New South Wales, Australia.
Karen BauThe Children's Hospital at Westmead, Sydney Children's Hospitals Network, Westmead, New South Wales, Australia.
Leanne DivineyCerebral Palsy Alliance/Research Institute, Specialty of Child & Adolescent Health, the University of Sydney, Camperdown, New South Wales, Australia.
Georgina HenryCerebral Palsy Alliance/Research Institute, Specialty of Child & Adolescent Health, the University of Sydney, Camperdown, New South Wales, Australia.
Nadia BadawiCerebral Palsy Alliance/Research Institute, Specialty of Child & Adolescent Health, the University of Sydney, Camperdown, New South Wales, Australia.
Maria KyriagisRehab2Kids, Sydney Children's Hospital, Sydney Children's Hospital Network, Randwick, New South Wales, Australia.
Sarah McIntyreCerebral Palsy Alliance/Research Institute, Specialty of Child & Adolescent Health, the University of Sydney, Camperdown, New South Wales, Australia.ORCID https://orcid.org/0000-0002-0234-1541

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe New South Wales (NSW) and Australian Capital Territory (ACT) Cerebral Palsy (CP) Register is a database of clinical and demographic information from children with CP. A child with CP resulting from an insult to the developing brain sustained between 29 days and 2 years of age is classified as having post-neonatally acquired CP (PNN-CP). In clinical services, children may meet the criteria and timing for PNN-CP but have a singular diagnosis of acquired/traumatic brain injury.

objectivesTo implement and evaluate a new CP register ascertainment strategy focused on identifying children with PNN-CP attending acquired brain injury rehabilitation services.

methodsElectronic medical records of children with an acquired brain injury attending the Sydney Children's Hospitals Network and John Hunter Hospital rehabilitation departments 2019-2024 were reviewed by researchers and rehabilitation paediatricians to identify children with PNN-CP. Children who fulfilled the criteria for CP were invited to participate in the CP Register. To evaluate this ascertainment strategy, we (i) ran descriptive statistics to analyse proportional changes of children with PNN-CP on the register and (ii) calculated temporal trends in prevalence per 10,000 live births for birth years 2003-2016, before and after the record ascertainment period.

resultsOf 1051 children with an acquired brain injury, 46 had PNN-CP (2003-2019) and had not previously been included on the register. This ascertainment strategy resulted in increased prevalence of PNN-CP in all 2-year time points between 2003 and 2016 and equated to a 31% improvement in ascertainment of children with PNN-CP on the register.

conclusionsAscertainment of children with PNN-CP for the NSW/ACT CP Register has been improved by systematically reviewing children with an acquired brain injury. This is now part of standard practice, and other registers should consider whether this strategy may improve ascertainment of PNN-CP in their regions.

Indexed as

Cerebral PalsyRegistriesAustralian Capital TerritoryBrain InjuriesElectronic Health RecordsHumansInfantNew South Walesbrain injurycerebral palsydisability

Identifiers

PMID39966337
PMCPMC12121311

What OpenQuestion holds

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LicenceCC BY-NC
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Registered trials

None linked

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.