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We read with great interest, ‘A national registry for sudden unexpected deaths of infants and children in England: why do we need one and do families want one?’1 In the USA’s experience, getting feedback from parents and other stakeholders was an important first step to implementing sudden unexpected infant death (SUID) and sudden death in the young (SDY) registries.2 3 Starting a registry in England is key to better understanding the causes of these tragic deaths so they can be prevented.
Although mortality data derived from death certificates are often used to monitor and track trends in sudden deaths among infants and children, death certificate surveillance has limited ability to capture details of the events and circumstances surrounding these deaths.2 In addition, for infants, US death certificate surveillance is affected by variations in cause-of-death reporting, making it necessary to combine underlying cause-of-death codes for SIDS, other ill-defined and unspecified causes of mortality, and accidental suffocation and strangulation in bed into a combined category, SUID.4 Although the SUID category facilitates more consistent tracking of mortality trends, the combined category does not enable researchers to distinguish between explained (eg, accidental suffocation) and unexplained causes (eg, unexplained sudden deaths).4 To address these shortcomings in surveillance, the US Centers for Disease Control and Prevention (CDC) and the US National Institutes of Health (NIH) established SUID (infants<365 days)2 and SDY (children≤20 years) registries.3 The SUID and SDY case registries supplement death certificate surveillance in multiple sites across the USA, by providing detailed information about death circumstances and autopsy findings, as well as biospecimens for SDY research only.
In 2009, the CDC launched the SUID case registry as part …
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