The Sudden Unexplained Death in Childhood Registry and Research Collaborative (SUDCRRC) is a multisite research collaborative created at NYU Langone Health in 2014 under the direction of Orrin Devinsky, MD, and Laura A. Gould, MSc.

We study sudden unexplained deaths in childhood (SUDC) with our team of experts from pediatrics, neurology, cardiology, radiology, pathology, and infectious disease to better understand and prevent these tragedies. By combining the knowledge of academic investigators, forensic pathologists, medical examiners, and coroners, we have explained deaths that have been previously unexplained.

We support grieving families in pursuing a greater understanding of their child’s death and work directly with parents or legal guardians who provide written consent for their child to be enrolled.

The SUDCRRC benefits from global participation and support, and our research findings enhance international scientific understanding of sudden death.

The SUDCRRC is approved by NYU Langone Health’s Institutional Review Board.

Examining the Complexities of Sudden Unexplained Death in Childhood

SUDC is the sudden death of a child between 12 months and 18 years of age that remains unexplained after a thorough investigation, including review of the clinical history and circumstances of death, and performance of a complete autopsy with appropriate ancillary testing (Krous et al., 2005, Pediatr Dev Pathol).

SUDC is not a diagnosis—it is a category of death that eludes our current understanding. Underlying causes may include cardiac, neurologic, metabolic, genetic, immunological, or other unknown conditions. Many SUDC cases involve healthy toddlers between the ages of 12 months and 4 years old, where it is the fourth leading category of death and associated with male predominance, sleep-related deaths in winter, and a history of febrile seizures in one-fourth to one-third of (National Vital Statistics, CDC WONDER Database; McGarvey et al., 2012, Arch Dis Child; UK National Child Mortality Database [NCMD] Programme SaUDiIaC; Sudden and Unexpected Deaths in Infancy and Childhood, National Child Mortality Database Programme Thematic Report, 2022).

Incidence of Sudden Unexplained Death in Childhood

Each year, more than 400 children in the United States die suddenly and inexplicably after their first birthday. In 2023, according to the U.S. Centers for Disease Control and Prevention (CDC):

• 247 children aged 1 to 4 years, 44 children aged 5 to 9 years, 37 children aged 10 to 14 years, and 103 children aged 15 to 18 years died without explanation (National Vital Statistics, CDC WONDER Database)
• slightly more males (60 percent) were affected
• unexplained deaths among children 1 to 4 years of age was the fourth leading category of death for this age group in 2022 and reflect the majority of deaths (~60 percent) across children 1 to 18 years.
• unexplained deaths in children occur 2.6 times more frequently in Black versus White populations
• more than 25,000 life years are lost annually to unexplained child deaths, aged 1 to 18 years

Research is crucial to understand and prevent these tragedies.

Leading Causes of Death Among 1- to 4-Year-Olds

U.S. Multiple Cause of Death Among 1- to 18-Year Olds, R96-R99, Crude Death Rates/100,000 Deaths

Contact Us

For more information about the SUDCRRC, please email SUDCRRC@NYULangone.org, or phone 646-754-2230. Research assistant professor Laura A. Gould’s email is Laura.Gould@NYULangone.org.

Our address is:

SUDCRRC
NYU Langone Comprehensive Epilepsy Center
223 E 34th St, Ground Floor
New York, NY 10016