Sudden Death in the Young (SDY) is a significant health problem with a devastating impact on families, care providers, and the community. Lack of accurate data on SDY incidence, epidemiology, underlying pathology, and risk factors, especially in diverse populations heretofore underrepresented, substantially hamper the design and implementation of screening and prevention of this lethal condition in all forms: sudden cardiac death in the young (SCDY) Sudden Unexplained Death in Epilepsy (SUDEP), and Sudden Infant Death Syndrome (SIDS). Results from the PI’s NHLBI-funded, ongoing San Francisco POST SCD (POstmortem Systematic InvesTigation of Sudden Cardiac Death) Study, which has already established a highly successful collaboration with the San Francisco Medical Examiner to fully investigate and autopsy every consecutive adult SCD since 2011, confirm the differential incidence and risk of adult SCD in minority populations, thus highlighting the critical need for data in these growing segments of the U.S. population. Further, PI’s expertise and unique contributions to the SUID and SDY Case registry thus far include to broad insights into potential SUID/SDYtrends in San Francisco with sudden deaths adjudicated due to occult renal failure and the creation of a UCSF-based resources for the entire CDC SUID/SDY Registry participants for (1) the detailed postmortem review of pacemaker and defibrillator interrogations and (2) cardiac pathology review We propose the extension of these activities and collaborations already in place to continue to fully investigate all incident SDY in San Francisco with complete capture of data, including autopsy/pathology reports, death certificates, medical records, paramedic runsheets, death scene and police investigation, biospecimen collection, and the timely review of every SDY by the Child Death Review (CDR) Team and Clinical Advanced Review Team.
Through San Francisco’s current participation in the SUID and SDY Registry, our team has maximized resources to develop a comprehensive, prospective, population-based surveillance system for SDY in a prototypic diverse community that presages near-term overall national demographic shifts. Through our findings, we have begun to lay the groundwork for informing future practices and policies for screening and prevention of SDY, and through our participation in the local CDRT meetings, have been able to improve policies and practice of death investigations, CDR processes, and systems serving families. Our team brings a sophisticated and thorough advanced review of cases, which has led to a discovery of renal failure as a potential unrecognized cause of SDY. Locally, we have reached out to partners and helped to better organize the CDR team, which was previously experiencing disorganization from changes in leadership. Broadly, our advanced review has served as an exemplar for other sites participating in the registry, and have made a second opinion service available for consultations on cardiac pathology and evaluation of cardiac devices. We have also assisted with development of the consent process by providing insight into our methods for consenting next of kin in our adult POST SCD study. Due to our experience with county-wide surveillance of adult sudden cardiac deaths, the PI and team have also shared epidemiologic insights including the importance of capturing survivor data, and additional details of deaths initially deemed accidental overdoses. As a clinical and research institution with a unique perspective on SDY/SUID cases, we expect to continue to contribute our insights towards the nationwide registry beyond the scope of our local cases.
