Evidence map›Paper›PMID 39863078›Full record

ArticleThe Journal of pediatrics2025

Data Collection Variability Across Neonatal Hypoxic-Ischemic Encephalopathy Registries.

Eric S Peeples, Ulrike Mietzsch, Eleanor Molloy, Gabrielle deVeber, Khorshid Mohammad, Janet S Soul, Danielle Guez-Barber, Betsy Pilon, Vann Chau, Sonia Bonifacio and 4 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in The Journal of pediatrics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing 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

5 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
  4. Observational
  5. 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

14 authors.

Eric S PeeplesDepartment of Pediatrics, University of Nebraska Medical Center, Omaha, NE; Division of Neonatology, Children's Nebraska, Omaha, NE; Child Health Research Institute, Omaha, NE. Electronic address: epeeples@childrensnebraska.org.
Ulrike MietzschDepartment of Pediatrics, University of Washington School of Medicine, Seattle, WA; Division of Neonatology, Seattle Children's Hospital, Seattle, WA.
Eleanor MolloyDepartment of Pediatrics, Trinity College Dublin, Dublin, Ireland; Children's Hospital Ireland, Dublin, Ireland.
Gabrielle deVeberThe Hospital for Sick Children, Toronto, Ontario, Canada; Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
Khorshid MohammadDepartment of Pediatrics, University of Calgary, Calgary, Alberta, Canada.
Janet S SoulDivision of Pediatric Neurology, Boston Children's Hospital, Boston, MA; Department of Pediatrics, Harvard Medical School, Cambridge, MA.
Danielle Guez-BarberChildren's Hospital Colorado, Aurora, CO; Department of Pediatrics, University of Colorado, Aurora, CO.
Betsy PilonHope for HIE, West Bloomfield Township, MI.
Vann ChauThe Hospital for Sick Children, Toronto, Ontario, Canada; Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
Sonia BonifacioLucile Packard Children's Hospital, Palo Alto, CA; Department of Pediatrics, Stanford University School of Medicine, Stanford, CA.
Jehier AfifiDepartment of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
Alexa CraigDepartment of Pediatrics, Barbara Bush Children's Hospital at Maine Health, Portland, ME; Department of Pediatrics, Tufts University School of Medicine, Boston, MA.
Pia WintermarkDepartment of Pediatrics, McGill University, Montreal, Quebec, Canada; Montreal Children's Hospital, Montreal, Quebec, Canada.
Newborn Brain Society Guidelines and Publications Committee

Funding

Child Neurologist Career Development Program (CNCDP)K12NS098482 · NINDS · HUGO W. MOSER RES INST KENNEDY KRIEGER · PI SCHLAGGAR, BRADLEY L · 2016 to 2025
$26.2M
NINDS NIH HHS K12 NS098482
6 · The paper itself

Abstract

objectiveTo assess variability among data elements collected among existing neonatal hypoxic-ischemic encephalopathy (HIE) data registries worldwide and to determine the need for future harmonization of standard common data elements. STUDY

designThis was a cross-sectional study of data elements collected from current or recently employed HIE registry data forms. Registries were identified by literature search and email inquiries to investigators worldwide. Data elements were categorized by group consensus.

resultsA total of 1281 data elements were abstracted from 22 registries based in 14 countries, including 3 middle-income countries. Registries had a median of 106.5 distinct data elements per registry (range 59-458). The most commonly collected data were related to pregnancy, therapeutic hypothermia, and short-term hospital outcomes. The least consistently collected data were laboratory values other than acid/base status values. Only 4 variables were consistently collected in every registry. Five registries included neurodevelopmental follow-up fields and 5 others linked their data to a separate follow-up registry.

conclusionMany HIE registries are collecting patient data around the world, but there is considerable variability in the number, type, and format of data collected. Future attempts to develop standard common data elements to harmonize data collection globally will be crucial to facilitate worldwide collaboration and to optimize management and outcome of neonatal HIE.

Indexed as

Data CollectionHypoxia-Ischemia, BrainRegistriesCross-Sectional StudiesFemaleHumansInfant, Newborncommon data elementsharmonizationperinatal asphyxiatherapeutic hypothermia

Identifiers

PMID39863078
PMCPMC13384812

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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.