Authors :
Presenting Author: Heather MacLeod, MS – SUID and SDY Case Registry Data Coordinating Center
Erik Buczkowski, MPH – Michigan Public Health Institute
Meghan Faulkner, MA – Michigan Public Health Institute
Krisha Felzke, MPH – Michigan Public Health Institute
Kristin Burns, MD – NIH
Bryanna Schwartz, MD, MPH – NIH
Vicky Whittemore, PhD – NIH
Rationale:
Understanding how and why infants, children, and young adults die suddenly and unexpectedly is the goal of the Sudden Unexpected Infant Death (SUID) and Sudden Death in the Young (SDY) Case Registry. Since 2015, the Case Registry has compiled information about young people (0-20 years) who die suddenly and unexpectedly, including sudden unexpected death in children with epilepsy/seizure disorder (SUDEP).
Methods:
Data were derived from the Pediatric National Fatality Review-Case Reporting System a population-based surveillance system that compiles information from autopsies and death investigations including information about the circumstances at death and the medical history of the child. Deaths occurred during 2015-2025 among residents of jurisdictions participating in the Case Registry. Case Registry cases are categorized using a standardized algorithm. We examined cases categorized as Unexplained-Sudden Unexpected Death in a Child with Epilepsy/Seizure Disorder and Unexplained-Possible Cardiac and Sudden Unexpected Death in a Child with Epilepsy/Seizure Disorder per the Case Registry Algorithm and applied the Nashef definitions of SUDEP. Cases of drownings and motor vehicle accidents in children with epilepsy/seizure disorders were included in this analysis.
Results:
Of 6400 Case Registry cases assessed, 244 were categorized as Unexplained-Sudden Unexpected Death in a Child with Epilepsy/Seizure Disorder and 34 as Sudden Unexplained-Unexpected Death in a Child with Epilepsy/Seizure Disorder/Possible Cardiac per the Case Registry Algorithm for a total of 278 cases (4%). Eighteen percent had a known genetic diagnosis, Dravet being the most common. Among the 278 cases 79% had an autopsy lower than the overall rate of autopsies in the Registry 92%, 60% met the Nashef definition of Definite SUDEP with 43% having abnormal brain findings consistent with their diagnosis, 7% met the definition of Definite SUDEP Plus with 13 having either a cardiac diagnosis or a significant cardiac finding at autopsy and 6 cases having a positive family history of cardiac disease or sudden death less than age 50, 16% met the definition of Probable SUDEP/Probably SUDEP Plus due to no autopsy performed, 4% met the definition of Possible SUDEP due to no autopsy performed, 13% of cases were Not SUDEP most commonly due to drowning as well as some motor vehicle crashes.
Conclusions:
The lower autopsy rate in this group of cases may be due to the complex medical history of cases, an assumption that the death was epilepsy related, and the workforce shortage in the forensic community. Increasing autopsy rates among those with epilepsy/seizure disorder might identify more cases that meet the definition of Definite SUDEP. Overall, 26% of children had neuropathology findings specific to their epilepsy diagnosis. Two thirds of cases met criteria for Definite SUDEP or Definite SUDEP Plus indicating a simpler definition may still be effective in capturing most cases of SUDEP for public health surveillance. Finally, the drowning deaths represent disparate cases with varying circumstances. By eliminating them completely from the SUDEP definition cases of SUDEP may be missed.
Funding:
CDC and NIH