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; Jehier Afifi; Alexa Craig; Pia Wintermark; Newborn Brain Society Guidelines and Publications Committee

doi:10.1016/j.jpeds.2025.114476

Data Collection Variability Across Neonatal Hypoxic-Ischemic Encephalopathy Registries

J Pediatr. 2025 Jan 23:114476. doi: 10.1016/j.jpeds.2025.114476. Online ahead of print.

Collaborators

Newborn Brain Society Guidelines and Publications Committee:
Sonia Bonifacio, Pia Wintermark, Hany Aly, Vann Chau, Hannah Glass, Monica Lemmon, Courtney J Wusthoff, Gabrielle deVeber, Andrea C Pardo, James P Boardman, Dawn Gano, Eric Peeples, Lara Leijser, Firdose Nakwa, Thiviya Selvanathan

Affiliations

¹ Department of Pediatrics, University of Nebraska Medical Center; Division of Neonatology, Children's Nebraska; Child Health Research Institute. Electronic address: epeeples@childrensnebraska.org.
² Department of Pediatrics, University of Washington School of Medicine; Division of Neonatology, Seattle Children's Hospital.
³ Department of Pediatrics, Trinity College Dublin; Children's Hospital Ireland.
⁴ The Hospital for Sick Children; Department of Pediatrics, University of Toronto.
⁵ Department of Pediatrics, University of Calgary.
⁶ Division of Pediatric Neurology, Boston Children's Hospital; Department of Pediatrics, Harvard Medical School.
⁷ Children's Hospital Colorado.
⁸ Hope for HIE.
⁹ Lucile Packard Children's Hospital; Department of Pediatrics, Stanford University School of Medicine.
¹⁰ Department of Pediatrics, Dalhousie University.
¹¹ Department of Pediatrics, Barbara Bush Children's Hospital at Maine Health; Department of Pediatrics, Tufts University School of Medicine.
¹² Department of Pediatrics, McGill University; Montreal Children's Hospital.

PMID: 39863078
DOI: 10.1016/j.jpeds.2025.114476

Abstract

Objective: To 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 design: This 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.

Results: A total of 1,281 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.

Conclusion: Many 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.

Keywords: Common data elements; harmonization; perinatal asphyxia; therapeutic hypothermia.