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Neonatal brain injuries in England: population-based incidence derived from routinely recorded clinical data held in the National Neonatal Research Database
  1. Chris Gale1,
  2. Yevgeniy Statnikov2,
  3. Sena Jawad1,
  4. Sabita N Uthaya1,
  5. Neena Modi1
  6. On behalf of the Brain Injuries expert working group
  1. 1 Section of Neonatal Medicine, Department of Medicine, Imperial College London, Chelsea and Westminster Hospital campus, London, UK
  2. 2 Society and College of Radiographers, London, London, UK
  1. Correspondence to Dr Chris Gale, Section of Neonatal Medicine, Department of Medicine, Imperial College London, Chelsea and Westminster Hospital campus, London, UK; christopher.gale{at}imperial.ac.uk

Abstract

Objective In 2015, the Department of Health in England announced an ambition to reduce ‘brain injuries occurring during or soon after birth’. We describe the development of a pragmatic case definition and present annual incidence rates.

Design Retrospective cohort study using data held in the National Neonatal Research Database (NNRD) extracted from neonatal electronic patient records from all National Health Service (NHS) neonatal units in England, Wales and Scotland. In 2010–2011, population coverage in the NNRD was incomplete, hence rate estimates are presented as a range; from 2012, population coverage is complete, and rates (95% CIs) are presented. Rates are per 1000 live births.

Setting NHS neonatal units in England.

Patients Infants admitted for neonatal care; denominator: live births in England.

Main outcome measure ‘Brain injuries occurring at or soon after birth’ defined as infants with seizures, hypoxic-ischaemic encephalopathy, stroke, intracranial haemorrhage, central nervous system infection and kernicterus and preterm infants with cystic periventricular leucomalacia.

Results In 2010, the lower estimate of the rate of ‘Brain injuries occurring at or soon after birth’ in England was 4.53 and the upper estimate was 5.19; in 2015, the rate was 5.14 (4.97, 5.32). For preterm infants, the population incidence in 2015 was 25.88 (24.51, 27.33) and 3.47 (3.33, 3.62) for term infants. Hypoxic-ischaemic encephalopathy was the largest contributor to term brain injury, and intraventricular/periventricular haemorrhage was the largest contributor to preterm brain injury.

Conclusions Annual incidence rates for brain injuries can be estimated from data held in the NNRD; rates for individual conditions are consistent with published rates. Routinely recorded clinical data can be used for national surveillance, offering efficiencies over traditional approaches.

  • nnrd
  • brain injuries
  • infant, newborn
  • electronic health records
  • intensive care, neonatal

This is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors The study was conceived and commissioned by the department of health in England. CG, YS, SNU and NM agreed the study design and definitions for data extraction in conjunction with the Brain Injuries Expert Group; CG, YS, SNU and NM were involved in analysis; all authors contributed to writing the manuscript and reviewed the final version submitted. CG and SJ had full access to all the data in the study and take full responsibility for the integrity of the data and accuracy of the data analysis.

  • Funding This study was funded by the Department of Health in England. Study funders had no role in study design, analysis, reporting or dissemination. CG is funded by the United Kingdom Medical Research Council (MRC) through a Clinician Scientist Fellowship award.

  • Competing interests CG is funded by the United Kingdom Medical Research Council (MRC) through a Clinician Scientist Fellowship award. In the last 5 years, CG has received grants and fellowships from National Institute ofHeath Research (NIHR) and the Academy of Medical Sciences; he has been awarded British Association of Perinatal Medicine (BAPM) Travel Awards, which are supported by Chiesi Pharmaceuticals, to attend educational conferences outside the submitted work. In the last 5 years, NM has received and grants from the National Institute of Heath Research, Medical Research Council, British Heart Foundation, Westminster Children’s Trust Fund, NHS England and Bliss and consultancy fees from Ferring Pharmaceuticals. CG, YS, SJ and NM work in the Neonatal Data Analysis Unit (NDAU), which houses the National Neonatal Research Database (NNRD); CG, SJ and NM do not receive salary or other financial reimbursement from the NDAU. During preparation of this manuscript, YS was employed by the NDAU as a data analyst.

  • Ethics approval This study is a service evaluation commissioned by the Department of Health in England. The National Research Ethics Service has approved the National Neonatal Research Database and its use for service evaluations (16/LO/1093).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Study data are held in the National Neonatal Research Database (NNRD) by the Neonatal Data Analysis Unit (NDAU). Details of how to access the National Neonatal Research Database may be found at: https://www1.imperial.ac.uk/neonataldataanalysis/data/utilisingnnrd/.

  • Collaborators The Brain Injuries Expert Working Group include Chris Gale, Imperial College London; Neema Modi, Imperial College London; Eugene Statnikov, Imperial College London; SNU, Imperial College London; Nilum Patel, Department of Health; Sarah Hegarty, Department of Health; Madeline Percival, Department of Health; Karen Todd, Department of Health; Matthew Jolly, NHS England; James Walker, Care Quality Commission; Tony Kelly, Kent, Surrey, Sussex Academic Health Sciences Network; Michele Upton, NHS Improvement; Birte Harlev-Lam, NHS Improvement; Katharine Robbins, NHS Digital; Marian Knight, National Perinatal Epidemiology Unit; David Odd, University of Bristol; Dimitrios Siassakos, University of Bristol; Michael Magro, NHS Resolution; Donald Peebles, UCL; Nikki Robertson, UCL; Karen Luyt, University of Bristol; Paul Clarke, Norfolk and Norwich Hospital; Mandy Forrester, My Birthplace project midwife; Julie Frohlich, Guy’s and St Thomas' Hospital; Alan Cameron, Royal College of Obstetrics and Gynaecology; Emily Petch, Royal College of Obstetrics and Gynaecology Each Baby Counts; Jacki Dopran, Homerton Hospital; Topun Austin, University of Cambridge; James P Boardman, University of Edinburgh; Frances Cowan, Imperial College London.

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