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  • Clinical Research Article
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Establishing a regional registry for neonatal encephalopathy: impact on identification of gaps in practice

Pediatric Research volume 95, pages 213–222 (2024)Cite this article

Abstract

Background

Neonatal encephalopathy (NE) continues to be a significant risk for death and disability. To address this risk, regional guidelines were developed with the support of a malpractice insurance patient safety organization. A NE registry was also established to include 14 centers representing around 50% of deliveries in the state of Massachusetts. The aim of this study was to identify areas of variation in practice that could benefit from quality improvement projects.

Methods

This manuscript reports on the establishment of the registry and the primary findings to date.

Results

From 2018 to 2020, 502 newborns with NE were evaluated for Therapeutic Hypothermia (TH), of which 246 (49%) received TH, representing a mean of 2.91 per 1000 live births. The study reports on prenatal characteristics, delivery room resuscitation, TH eligibility screening, and post-natal management of newborns with NE who did and did not receive TH.

Conclusions

The registry has allowed for the identification of areas of variation in clinical practices, which have guided ongoing quality improvement projects. The authors advocate for the establishment of local and regional registries to standardize and improve NE patient care. They have made the registry data collection tools freely available for other centers to replicate this work.

Impact

  • Malpractice insurance companies can take an active role in supporting clinicians in establishing clinical practice guidelines and regional registries.

  • Establishing a collaborative regional neonatal encephalopathy (NE) registry is feasible.

  • Data Collection tools for a NE registry have been made publicly available to be adopted and replicated by other groups.

  • Establishing a regional NE registry allowed for the identification of gaps in knowledge, variations in practice, and the opportunity to advance care through quality improvement projects.

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Acknowledgements

The CRICO Neonatal Encephalopathy Registry included the following: Sara Bates, Mass General Hospital for Children; Ihor Bilyk, North Shore Medical Center; Jason Boulanger, CRICO; Kimberlee Chatson, Cambridge Health Alliance; Sara Cherkerzian, Brigham and Women’s Hospital; Ivana Culic Beverley Hospital; Mohamed El-Dib, Brigham and Women’s Hospital; Hoda El-Shibini; Brigham and Women’s Hospital; Andrew Farkas, Boston Medflight; John Fiascone, South Shore Hospital; Alan Fujii, Good Samaritans Medical Center; Munish Gupta, Beth Israel Medical Center; Anne Hansen, Boston Children’s Hospital; Emily Herzberg, Mass General Hospital for Children; Terrie Inder, Brigham and Women’s Hospital; Janet Lloyd, Mount Auburn Hospital; Marianna Parker, Holy Family Hospital; Silvia Patrizi; Newton Wellesley Hospital; Micheal Prenedergast, Boston Medflight; Janet Soul, Boston Children’s Hospital; Kyoung Young, Saint Elizabeth’s Medical Center.

Funding

This manuscript is supported by The Risk Management Foundation of the Harvard Medical Institutions Incorporated (CRICO).

Author information

Authors and Affiliations

  1. Division of Newborn Medicine, Department of Pediatrics, Brigham and Women’s Hospital, Boston, MA, USA

    Mohamed El-Dib, Hoda El-Shibiny, Brian Walsh, Sara Cherkerzian, Silvia Patrizi & Terrie Inder

  2. Harvard Medical School, Boston, MA, USA

    Mohamed El-Dib, Sara Cherkerzian, Sara V. Bates, Munish Gupta, Anne Hansen, Emily Herzberg, Silvia Patrizi & Janet S. Soul

  3. Department of Neonatology, Cork University Maternity Hospital, Cork, Ireland

    Brian Walsh

  4. Department of Patient Safety, CRICO/Risk Management Foundation of the Harvard Medical Institutions, Boston, MA, USA

    Jason Boulanger

  5. Division of Newborn Medicine, Mass General Hospital for Children, Boston, MA, USA

    Sara V. Bates, Emily Herzberg & Kyoung Joung

  6. Department of Neonatology, Beth Israel Hospital, Boston, MA, USA

    Ivana Culic & Munish Gupta

  7. Department of Pediatrics, Beverley Hospital, Boston, MA, USA

    Ivana Culic

  8. Division of Newborn Medicine, Boston Children’s Hospital, Boston, MA, USA

    Anne Hansen

  9. Department of Pediatrics, St. Elizabeth Medical Center, Brighton, MA, USA

    Kyoung Joung

  10. Senior Vice President, Chief Quality and Safety Officer, South Shore Health, South Weymouth, MA, USA

    Carol Keohane

  11. Newton Wellesley Hospital, Wellesley, MA, USA

    Silvia Patrizi

  12. Department of Neurology, Boston Children’s Hospital, Boston, MA, USA

    Janet S. Soul

  13. Center for Neonatal Research, Children’s Hospital of Orange County, Orange County, CA, USA

    Terrie Inder

  14. University of California, Irvine - College of Medicine, Irvine, CA, USA

    Terrie Inder

Authors
  1. Mohamed El-Dib
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  2. Hoda El-Shibiny
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  14. Janet S. Soul
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  15. Terrie Inder
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Consortia

On behalf of the CRICO Neonatal Encephalopathy Registry

Contributions

Substantial contributions to conception and design, drafting the article or revising it critically for important intellectual content, and final approval of the version to be published: all authors.

Corresponding author

Correspondence to Mohamed El-Dib.

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Competing interests

M.E.-D. discloses he is the PI of an investigator-initiated research funded by Medtronic and served once on an advisory board for Radiometer. The other authors declare no competing interests.

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El-Dib, M., El-Shibiny, H., Walsh, B. et al. Establishing a regional registry for neonatal encephalopathy: impact on identification of gaps in practice. Pediatr Res 95, 213–222 (2024). https://doi.org/10.1038/s41390-023-02763-3

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