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. It is the largest registry of its kind.

We study sudden unexplained deaths in childhood (SUDC) through a large international and multidisciplinary team of experts from pediatrics, neurology, cardiology, radiology, pathology, and infectious disease.

Our goals are to understand SUDC and to identify children who are at risk and develop prevention methods.

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

The SUDCRRC is committed to understanding why children die inexplicably to prevent the anguish of others in the future and to perform the highest-quality research to reach our goals.

The SUDCRRC benefits from global participation, donations, and scientific grant support. 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 performing 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 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. In this age range, it is associated with male predominance, sleep-related deaths in winter, and a history of febrile seizures in one-fourth to one-third of those affected (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, approximately 400 children in the United States die suddenly and inexplicably after their first birthday. In 2024, according to the U.S. Centers for Disease Control and Prevention (CDC):

• 192 children aged 1 to 4 years, 48 children aged 5 to 9 years, 44 children aged 10 to 14 years, and 88 children aged 15 to 18 years died without explanation (National Vital Statistics, CDC WONDER Database)
• more males (61 percent) were affected
• unexplained deaths among children aged 1 to 4 years was the fifth leading category of death for this age group in 2024 and reflect half of the deaths (51 percent) across children aged 1 to 18 years
• children aged 1 to 2 years are the most vulnerable, with a crude death rate of 3.3/100,000 in 2024
• unexplained deaths in children occur 2.7 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