SUDC Registry and Research Collaborative

The Sudden Unexplained Death in Childhood Registry and Research Collaborative (SUDCRRC), created at NYU Langone Health in 2014, connects academic investigators, forensic pathologists, and medical examiner and coroner partner offices to study sudden unexpected pediatric deaths, aged 1 month to 18 years, whose death is unexplained or unclear at the end of the public mandated investigation, including autopsy. Each case includes collection and analysis of all records (medical history from prenatal records throughout life, death scene investigation, autopsy/toxicology/ancillary death investigation reports including photographs and histology slides), biospecimens, and in-depth family interviews. Whole exome sequencing is performed on each deceased child and both biological parents. Additional studies are pursued when indicated by pathology review. Each case receives a multidisciplinary masked review process and parental written consent is obtained. The NYU institutional review board approved this study. ]]>
InclusionParent(s) or guardian(s) of a child aged 1 month* through 18 years who has died suddenly and unexpectedly where 1) the preliminary cause of death is undetermined and the brain has been retained OR 2) the final cause of death is unexplained or unclear occurring in the United States or Internationally with medical records in English.*If the child is less than 11 months and sleep related, the investigation must show a safe sleep environment and minimal risk of asphyxia. ExclusionThe study excludes cases of apparent suicide, apparent homicide or accident where the external cause was the obvious and only reason for death. ]]>
The Sudden Unexplained Death in Childhood Registry and Research Collaborative (SUDCRRC) was created in 2014 at NYU Langone Health, by Principal Investigator Dr. Orrin Devinsky, and Research Scientist Laura Gould. Dr. Devinsky is a pediatric neurologist known worldwide for his dedication to patient care and research of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP). Laura’s history of SUDC is personal. After the unexplained death of her 15-month old daughter, Maria, in 1997, she initiated the first SUDC research in the U.S., coauthored the first definition of SUDC, cofounded the first organization devoted to SUDC, and advocated for U.S. state and federal legislation to support SUDC efforts.]]>