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Harnessing a neonatal encephalopathy registry for regional quality improvement efforts

Journal of Perinatology (2026)Cite this article

Subjects

Abstract

Objective

Improve regional clinical care for infants with neonatal encephalopathy presumed to be due to hypoxic-ischemic encephalopathy (HIE) by developing a clinical data registry.

Study design

We developed a regional multicenter registry of newborns at risk for HIE and leveraged data collected within the registry to design and monitor biannually quality improvement metrics in a collaborative effort among site investigators.

Result

Over the 3 years since beginning our improvement efforts, we have demonstrated positive trends in all three initial metrics decided on by our investigators: increasing the cord blood gas acquisition in high-risk deliveries (median 74–87%); increasing neurological exam and encephalopathy score documentation in infants with perinatal acidosis (17–36%); and decreasing the incidence of infants discharged on anti-seizure medication (60–29%).

Conclusion

In addition to providing hypothesis-generating research data, local and regional registry data can be successfully utilized for quality improvement efforts across multiple hospitals.

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Fig. 1: Subject recruitment and quality metrics.

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Data availability

The dataset analyzed for the current study are available from the corresponding author on reasonable request.

References

  1. Gunn AJ, Thoresen M. Neonatal encephalopathy and hypoxic-ischemic encephalopathy. Handb Clin Neurol. 2019;162:217–37. https://doi.org/10.1016/B978-0-444-64029-1.00010-2.

    Article  PubMed  Google Scholar 

  2. Wassink G, Gunn ER, Drury PP, Bennet L, Gunn AJ. The mechanisms and treatment of asphyxial encephalopathy. Front Neurosci. 2014;8. https://doi.org/10.3389/fnins.2014.00040.

  3. Pierrat V, Haouari N, Liska A, Thomas D, Subtil D, Truffert P, et al. Prevalence, causes, and outcome at 2 years of age of newborn encephalopathy: population based study. Arch Dis Child Fetal Neonatal Ed. 2005;90:F257–F261. https://doi.org/10.1136/adc.2003.047985.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  4. Allen KA, Brandon DH. Hypoxic ischemic encephalopathy: pathophysiology and experimental treatments. Newborn Infant Nurs Rev NAINR. 2011;11:125–33. https://doi.org/10.1053/j.nainr.2011.07.004.

    Article  PubMed  Google Scholar 

  5. Kurinczuk JJ, White-Koning M, Badawi N. Epidemiology of neonatal encephalopathy and hypoxic-ischaemic encephalopathy. Early Hum Dev. 2010;86:329–38. https://doi.org/10.1016/j.earlhumdev.2010.05.010.

    Article  PubMed  Google Scholar 

  6. Azzopardi D, Strohm B, Marlow N, Brocklehurst P, Deierl A, Eddama O, et al. Effects of hypothermia for perinatal asphyxia on childhood outcomes. N Engl J Med. 2014;371:140–9. https://doi.org/10.1056/NEJMoa1315788.

    Article  PubMed  CAS  Google Scholar 

  7. Edwards AD, Brocklehurst P, Gunn AJ, Halliday H, Juszczak E, Levene M, et al. Neurological outcomes at 18 months of age after moderate hypothermia for perinatal hypoxic ischaemic encephalopathy: synthesis and meta-analysis of trial data. BMJ. 2010;340:c363. https://doi.org/10.1136/bmj.c363.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Jacobs SE, Berg M, Hunt R, Tarnow-Mordi WO, Inder TE, Davis PG. Cooling for newborns with hypoxic ischaemic encephalopathy. Cochrane Database Syst Rev. 2013;CD003311. https://doi.org/10.1002/14651858.CD003311.pub3.

  9. Natarajan G, Pappas A, Shankaran S. Outcomes in childhood following therapeutic hypothermia for neonatal hypoxic-ischemic encephalopathy (HIE). Semin Perinatol. 2016;40:549–55. https://doi.org/10.1053/j.semperi.2016.09.007.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Nelson KB, Bingham P, Edwards EM, Horbar J, Kenny M, Inder T, et al. Antecedents of neonatal encephalopathy in the Vermont Oxford Network encephalopathy registry. Pediatrics. 2012;130:878–86. https://doi.org/10.1542/peds.2012-0714.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Okulu E, Hirfanoglu IM, Satar M, Erdeve O, Koc E, Ozlu F, et al. An observational, multicenter, registry-based cohort study of Turkish Neonatal Society in neonates with Hypoxic ischemic encephalopathy. PLOS One. 2023;18:e0295759. https://doi.org/10.1371/journal.pone.0295759.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  12. Beltempo M, Wintermark P, Mohammad K, Jabbour E, Afifi J, Shivananda S, et al. Variations in practices and outcomes of neonates with hypoxic ischemic encephalopathy treated with therapeutic hypothermia across tertiary NICUs in Canada. J Perinatol. 2022;42:898–906. https://doi.org/10.1038/s41372-022-01412-7.

    Article  PubMed  CAS  Google Scholar 

  13. Quinones Cardona V, Rao R, Zaniletti I, Joe P, Johnson Y, DiGeronimo R, et al. Association of hospital resource utilization with neurodevelopmental outcomes in neonates with hypoxic-ischemic encephalopathy. JAMA Netw Open. 2023;6:e233770. https://doi.org/10.1001/jamanetworkopen.2023.3770.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Rao R, Mietzsch U, DiGeronimo R, Hamrick SE, Dizon MLV, Lee K, et al. Utilization of therapeutic hypothermia and neurological injury in neonates with mild hypoxic-ischemic encephalopathy: a report from Children’s Hospital Neonatal Consortium. Am J Perinatol. 2022;39:319–28. https://doi.org/10.1055/s-0040-1716341.

    Article  PubMed  Google Scholar 

  15. Rao R, Lee KS, Zaniletti I, Yanowitz TD, DiGeronimo R, Dizon MLV, et al. Antimicrobial therapy utilization in neonates with hypoxic-ischemic encephalopathy (HIE): a report from the Children’s Hospital Neonatal Database (CHND). J Perinatol. 2020;40:70–78. https://doi.org/10.1038/s41372-019-0527-2.

    Article  PubMed  CAS  Google Scholar 

  16. Dizon MLV, Rao R, Hamrick SE, Zaniletti I, DiGeronimo R, Natarajan G, et al. Practice variation in anti-epileptic drug use for neonatal hypoxic-ischemic encephalopathy among regional NICUs. BMC Pediatr. 2019;19:67. https://doi.org/10.1186/s12887-019-1441-7.

    Article  PubMed  PubMed Central  Google Scholar 

  17. El-Dib M, El-Shibiny H, Walsh B, Cherkerzian S, Boulanger J, Bates SV, et al. Establishing a regional registry for neonatal encephalopathy: impact on identification of gaps in practice. Pediatr Res. 2024;95:213–22. https://doi.org/10.1038/s41390-023-02763-3.

    Article  PubMed  Google Scholar 

  18. Pfister RH, Bingham P, Edwards EM, Horbar JD, Kenny MJ, Inder T, et al. The Vermont Oxford Neonatal Encephalopathy Registry: rationale, methods, and initial results. BMC Pediatr. 2012;12:84. https://doi.org/10.1186/1471-2431-12-84.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Blecharczyk E, Lee L, Birnie K, Gupta A, Davis A, Van Meurs K, et al. Standardized evaluation of cord gases in neonates at risk for hypoxic ischemic encephalopathy. Hosp Pediatr. 2021;12:29–37. https://doi.org/10.1542/hpeds.2021-006135.

    Article  Google Scholar 

  20. Committee on Fetus and Newborn. Hypothermia and neonatal encephalopathy. Pediatrics. 2014;133:1146–50. https://doi.org/10.1542/peds.2014-0899.

    Article  Google Scholar 

  21. Donn SM, Chiswick ML, Fanaroff JM. Medico-legal implications of hypoxic-ischemic birth injury. Semin Fetal Neonatal Med. 2014;19:317–21. https://doi.org/10.1016/j.siny.2014.08.005.

    Article  PubMed  Google Scholar 

  22. Fineschi V, Viola RV, La Russa R, Santurro A, Frati P. A controversial medicolegal issue: timing the onset of perinatal hypoxic-ischemic brain injury. Mediators Inflamm. 2017;2017:6024959. https://doi.org/10.1155/2017/6024959.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  23. Schifrin BS, Soliman M, Koos B. Litigation related to intrapartum fetal surveillance. Best Pract Res Clin Obstet Gynaecol. 2016;30:87–97. https://doi.org/10.1016/j.bpobgyn.2015.06.007.

    Article  PubMed  Google Scholar 

  24. Sewell EK, Shankaran S, McDonald SA, Hamrick S, Wusthoff CJ, Adams-Chapman I, et al. Antiseizure medication at discharge in infants with hypoxic-ischaemic encephalopathy: an observational study. Arch Dis Child Fetal Neonatal Ed. 2023;108:421–8. https://doi.org/10.1136/archdischild-2022-324612.

    Article  PubMed  Google Scholar 

  25. Shellhaas RA, Chang T, Wusthoff CJ, Soul JS, Massey SL, Chu CJ, et al. Treatment duration after acute symptomatic seizures in neonates: a multicenter cohort study. J Pediatr. 2017;181:298–301.e1. https://doi.org/10.1016/j.jpeds.2016.10.039.

    Article  PubMed  Google Scholar 

  26. Bittigau P, Sifringer M, Genz K, Reith E, Pospischil D, Govindarajalu S, et al. Antiepileptic drugs and apoptotic neurodegeneration in the developing brain. Proc Natl Acad Sci. 2002;99:15089–94. https://doi.org/10.1073/pnas.222550499.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  27. Farwell JR, Lee YJ, Hirtz DG, Sulzbacher SI, Ellenberg JH, Nelson KB. Phenobarbital for febrile seizures — effects on intelligence and on seizure recurrence. N Engl J Med. 1990;322:364–9. https://doi.org/10.1056/NEJM199002083220604.

    Article  PubMed  CAS  Google Scholar 

  28. Pisani F, Facini C, Pavlidis E, Spagnoli C, Boylan G. Epilepsy after neonatal seizures: literature review. Eur J Paediatr Neurol. 2015;19:6–14. https://doi.org/10.1016/j.ejpn.2014.10.001.

    Article  PubMed  Google Scholar 

  29. Glass HC, Grinspan ZM, Shellhaas RA. Outcomes after acute symptomatic seizures in neonates. Semin Fetal Neonatal Med. 2018;23:218–22. https://doi.org/10.1016/j.siny.2018.02.001.

    Article  PubMed  Google Scholar 

  30. Glass HC, Soul JS, Chang T, Wusthoff CJ, Chu CJ, Massey SL, et al. Safety of early discontinuation of antiseizure medication after acute symptomatic neonatal seizures. JAMA Neurol. 2021;78:817–25. https://doi.org/10.1001/jamaneurol.2021.1437.

    Article  PubMed  Google Scholar 

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Acknowledgements

We would like to thank all the patients and clinicians caring for the patients across all the registry sites. Additionally, we would like to thank all the registry staff and investigators (listed in Supplementary File 2).

Author information

Authors and Affiliations

  1. Department of Pediatrics, University of Nebraska Medical Center, Omaha, NE, USA

    Fatima M. Al-Sammak, Amanda O. Johnson, Ann Anderson Berry & Eric S. Peeples

  2. Methodist Women’s Hospital, Omaha, NE, USA

    Joshua C. Euteneuer

  3. Department of Pediatrics, Creighton University, Omaha, NE, USA

    Nick Townley

  4. Child Health Research Institute, Omaha, NE, USA

    Amanda O. Johnson, Ann Anderson Berry & Eric S. Peeples

  5. Children’s Nebraska, Omaha, NE, USA

    Ann Anderson Berry & Eric S. Peeples

Authors
  1. Fatima M. Al-Sammak
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  2. Joshua C. Euteneuer
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  4. Amanda O. Johnson
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  5. Ann Anderson Berry
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  6. Eric S. Peeples
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Consortia

on behalf of the Midwest Neonatal Encephalopathy Registry

  • Joshua C. Euteneuer
  • , Nick Townley
  • , Ann Anderson Berry
  •  & Eric S. Peeples

Contributions

FA, AAB, and EP conceptualized the study; FA and EP performed the analysis and prepared the original draft of the manuscript; FA, JE, NT, AJ, AAB, and EP interpreted the data and critically reviewed and revised the final manuscript.

Corresponding author

Correspondence to Eric S. Peeples.

Ethics declarations

Competing interests

The authors declare no competing interest.

Ethics approval and consent to participate

All methods were performed in accordance with the relevant guidelines and regulations. The University of Nebraska Medical Center Institutional Review Board approved this study as a central IRB (0639-17-EP). All subjects enrolled under the central IRB provided informed consent for their inclusion. One site chose to submit their own application due to a lack of follow up data eliminating the need to collect protected health information. The UnityPoint Health Institutional Review Board approved that site’s arm of the study (IM2019-084), including a waiver of consent.

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Al-Sammak, F.M., Euteneuer, J.C., Townley, N. et al. Harnessing a neonatal encephalopathy registry for regional quality improvement efforts. J Perinatol (2026). https://doi.org/10.1038/s41372-025-02533-5

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