Data Collection Variability Across Neonatal Hypoxic-Ischemic Encephalopathy Registries - 10/03/25
, Ulrike Mietzsch, MD 4, 5, Eleanor Molloy, MBBCh, PhD 6, 7, Gabrielle deVeber, MD 8, 9, Khorshid Mohammad, MD 10, Janet S. Soul, MD 11, 12, Danielle Guez-Barber, MD, PhD 13, 14, Betsy Pilon 15, Vann Chau, MD 8, 9, Sonia Bonifacio, MD 16, 17, Jehier Afifi, MBBCh, MSc 18, Alexa Craig, MD 19, 20, Pia Wintermark, MD 21, 22on behalf of the
Newborn Brain Society Guidelines and Publications Committee
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 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.
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.
Le texte complet de cet article est disponible en PDF.Keywords : common data elements, harmonization, perinatal asphyxia, therapeutic hypothermia
Abbreviations : CDE, ECMO, HIC, HIE, LMIC, NE, PA, TH
Plan
| Newborn Brain Society Guidelines and Publications Committee: Dr Sonia Bonifacio. Department of Pediatrics (Neonatology), Lucile Packard Children's Hospital and Stanford University. Palo Alto, CA. United States; Dr Pia Wintermark. Department of Pediatrics, Faculty of Medicine and Health Sciences, McGill University. Montreal, Canada; Dr Hany Aly. Division of Neonatology, Cleveland Clinic Children's Hospital, Cleveland, OH, United States; Dr Vann Chau. Department of Pediatrics (Neurology), The Hospital for Sick Children, SickKids Research Institute (Neuroscience and Mental Health) and University of Toronto, Ontario, Canada; Dr Hannah Glass. Departments of Neurology & Pediatrics, UCSF School of Medicine, University of California, San Francisco, San Francisco, CA, United States; Dr Monica Lemmon. Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, United States; Dr Courtney J. Wusthoff. Department of Neurology, University of California, Davis, CA, United States; Dr Gabrielle deVeber. Department of Pediatrics (Neurology), The Hospital for Sick Children, SickKids Research Institute (Child Health Evaluative Sciences) and University of Toronto, Toronto, Ontario, Canada; Dr Andrea C. Pardo. Department of Pediatrics (Neurology and Epilepsy). Northwestern University Feinberg School of Medicine. Chicago, IL, United States; Dr James P. Boardman. Centre for Reproductive Health, Institute for Regeneration and Repair, University of Edinburgh, Edinburgh, UK; Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, United Kingdom; Dr Dawn Gano. Departments of Neurology & Pediatrics, UCSF School of Medicine, University of California, San Francisco, San Francisco, CA, United States; Dr Eric Peeples. Department of Pediatrics, University of Nebraska Medical Center, Children's Nebraska, Child Health Research Institute, Omaha, NE, United States; Dr Lara Leijser. Department of Pediatrics, Section of Neonatology Cumming School of Medicine, University of Calgary, Alberta, Canada; Dr Firdose Nakwa. Department of Paediatrics and Child Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa; Dr Thiviya Selvanathan. Department of Pediatrics, BC Children's Hospital Research Institute and University of British Columbia, Vancouver, BC, Canada. |
Vol 279
Article 114476- avril 2025 Retour au numéro
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