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National registry for sudden unexpected deaths of infants and children in England: why do we need one and do families want one?
  1. Emma Matthews1,
  2. Peter Blair2,
  3. Sanjay Sisodiya3,
  4. Stuart Jones4,
  5. Neil Sebire5,
  6. Elijah Behr6,
  7. Peter Fleming7
  1. 1 Queen Square Centre for Neuromuscular Diseases, Institute of Neurology, University College London, London, UK
  2. 2 Centre for Child and Adolescent Health, University of Bristol School of Social and Community Medicine, Bristol, Bristol, UK
  3. 3 Clinical and Experimental Epilepsy, University College London Institute of Neurology, London, London, UK
  4. 4 East Surrey Hospital, Redhill, Surrey, UK
  5. 5 Histopathology, Great Ormond Street Hospital For Children NHS Trust, London, London, UK
  6. 6 Cardiology Clinical Academic Group, St George’s University, London, UK
  7. 7 Child and Adolescent Health, University of Bristol, Bristol, UK
  1. Correspondence to Dr Emma Matthews, Queen Square Centre for Neuromuscular Diseases, Institute of Neurology, University College London, London, UK; emma.matthews{at}ucl.ac.uk

Abstract

The sudden and unexpected death of an infant or child is devastating. An inability to explain why an infant or child died is difficult to accept for both families and professionals. No reliable national dataset exists to estimate precisely how many infants and children die unexpectedly each year in England. This lack of accurate epidemiological data belies the scale of this public health problem. Detailed controlled observational studies of infant deaths identifying risk factors and providing evidence-based advice for parents has seen a dramatic reduction in incidence over the last 30 years by almost 80% but greater knowledge is needed if future deaths of infants and older children are to be prevented and families optimally supported. We propose that a national registry of sudden unexpected deaths in infancy and childhood would accurately determine incidence, identify unknown risk factors and highlight good care practices, ensuring these can be standardised nationally. For such a project to be successful, however, parents must be at the heart of it. We held a consultation day between families, professionals and supporting charities (The Lullaby Trust, Child Bereavement UK, SUDC UK and CRY) to seek opinion on the desire for a registry and how best to ensure families are engaged. Here, we summarise our rationale for a registry and the feedback we received from attendees regarding their views of the proposal and the practical aspects of administering it.

  • epidemiology
  • general paediatrics
  • sids
  • patient perspective
  • sudc

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

https://doi.org/10.1136/archdischild-2018-316542

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    Footnotes

    • Contributors This is a report of a public engagement meeting held between families, charities and professionals. It summarises the discussions held, comments made on the day and written feedback received in the evaluation form. SJ is a parent representative who attended the meeting, contributed to discussion and coauthored the manuscript. EM was awarded a bursary by the UCL public engagement unit for the workshop on which this report is based and wrote the first draft of the manuscript. EM, PF, PB, SS, NS and EB planned and attended the workshop, worked interactively with charities to invite attendees and contributed to the editing and revising of the manuscript.

    • Funding EM is supported by a Wellcome Trust clinical research career development fellowship and received funding for this workshop from the UCL Public Engagement Unit. Part of this work was undertaken at University College London Hospitals/University College London, which received a proportion of funding from the Department of Health’s National Institute for Health Research Biomedical Research Centres funding scheme. EB is supported by HEFCE. SS received funding support from the Epilepsy Society. PB and PF have received funding from the Lullaby Trust.

    • Competing interests None declared.

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

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