What is the SUDCRRC?
The Sudden Unexplained Death in Childhood Registry and Research Collaborative (SUDCRRC) is a multi-site research collaborative created at NYU Langone Health in 2014 under the direction of Orrin Devinsky, MD and Laura 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 learn to 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/legal guardians who provide written consent for their child to be enrolled.
The SUDCRRC benefits from global participation and support and the research findings enhance international scientific understanding of sudden death.
The SUDCRRC is approved by the NYU Langone Health’s Institutional Review Board.
What is SUDC?
Sudden Unexplained Death in Childhood (SUDC) is the sudden death of a child between 12 months and 18 years of age which 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, 2005).
Sudden Unexplained Death in Childhood is not a diagnosis – it is a category of death that eludes our current understanding. Underlying causes may include cardiac, neurologic, metabolic, genetic, and immunological conditions. Many SUDC cases involve healthy toddlers between the ages of 12 months and 4 years old where it is the 5th leading category of death and associated with male predominance, sleep related deaths in winter, and a history of febrile seizures in ~28% of cases.
What is SUDC?
Sudden Unexplained Death in Childhood (SUDC) is the sudden death of a child between 12 months and 18 years of age which 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, 2005).
Sudden Unexplained Death in Childhood is not a diagnosis – it is a category of death that eludes our current understanding. Underlying causes may include cardiac, neurologic, metabolic, genetic, and immunological conditions. Many SUDC cases involve healthy toddlers between the ages of 12 months and 4 years old where it is the 4th leading category of death and associated with male predominance, sleep related deaths in winter, and a history of febrile seizures in ~28% of cases.
How Common Is SUDC?
- Each year, over 450 U.S. children die suddenly and inexplicably after their first birthday. In 2022, according to the U.S. Centers for Disease Control and Prevention (CDC), 279 children aged 1 to 4 years, 46 children aged 5 to 9 years, 38 children aged 10 to 14 years, and 89 children aged 15 to 18 years died without explanation.*
- Slightly more males (57%) were affected.
- Unexplained deaths among children 1 to 4 years of age is the 4th leading category of deaths for this age group and reflect the majority of deaths (62%) across children 1-18 years.
- Unexplained deaths in children occur 2.4x Blacks versus Whites.
- Research is crucial to understand and prevent these tragedies.
U.S. Leading Causes of Death Among 1-4yo*
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The SUDCRRC is approved by the NYU Langone Health’s Institutional Review Board (i14-01061).