title: The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality.
abstract: Knowledge gaps persist about the incidence of and risk factors for sudden death in the young (SDY). The SDY Case Registry is a collaborative effort between the National Institutes of Health, the Centers for Disease Control and Prevention, and the Michigan Public Health Institute. Its goals are to: (1) describe the incidence of SDY in the United States by using population-based surveillance; (2) compile data from SDY cases to create a resource of information and DNA samples for research; (3) encourage standardized approaches to investigation, autopsy, and categorization of SDY cases; (4) develop partnerships between local, state, and federal stakeholders toward a common goal of understanding and preventing SDY; and (5) support families who have lost loved ones to SDY by providing resources on bereavement and medical evaluation of surviving family members. Built on existing Child Death Review programs and as an expansion of the Sudden Unexpected Infant Death Case Registry, the SDY Case Registry achieves its goals by identifying SDY cases, providing guidance to medical examiners/coroners in conducting comprehensive autopsies, evaluating cases through child death review and an advanced review by clinical specialists, and classifying cases according to a standardized algorithm. The SDY Case Registry also includes a process to obtain informed consent from next-of-kin to save DNA for research, banking, and, in some cases, diagnostic genetic testing. The SDY Case Registry will provide valuable incidence data and will enhance understanding of the characteristics of SDY cases to inform the development of targeted prevention efforts.
authors.affiliation: Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute and kristin.burns@nih.gov.
authors.forename: Kristin M
authors.initials: KM
authors.lastname: Burns
authors.affiliation: Division of Pediatric Cardiology, University of Michigan Medical School, Ann Arbor, Michigan.
authors.forename: Lauren
authors.initials: L
authors.lastname: Bienemann
authors.affiliation: Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: Lena
authors.initials: L
authors.lastname: Camperlengo
authors.affiliation: Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: Carri
authors.initials: C
authors.lastname: Cottengim
authors.affiliation: National Center for Fatality Review and Prevention, Michigan Public Health Institute, Okemos, Michigan; and.
authors.forename: Theresa M
authors.initials: TM
authors.lastname: Covington
authors.affiliation: National Center for Fatality Review and Prevention, Michigan Public Health Institute, Okemos, Michigan; and.
authors.forename: Heather
authors.initials: H
authors.lastname: Dykstra
authors.affiliation: National Center for Fatality Review and Prevention, Michigan Public Health Institute, Okemos, Michigan; and.
authors.forename: Meghan
authors.initials: M
authors.lastname: Faulkner
authors.affiliation: Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: Rosemarie
authors.initials: R
authors.lastname: Kobau
authors.affiliation: DB Consulting Group, Inc, Silver Spring, Maryland.
authors.forename: Alexa B
authors.initials: AB
authors.lastname: Erck Lambert
authors.affiliation: National Center for Fatality Review and Prevention, Michigan Public Health Institute, Okemos, Michigan; and.
authors.forename: Heather
authors.initials: H
authors.lastname: MacLeod
authors.affiliation: Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: Sharyn E
authors.initials: SE
authors.lastname: Parks
authors.affiliation: Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute and.
authors.forename: Ellen
authors.initials: E
authors.lastname: Rosenberg
authors.affiliation: Division of Pediatric Cardiology, University of Michigan Medical School, Ann Arbor, Michigan.
authors.forename: Mark W
authors.initials: MW
authors.lastname: Russell
authors.affiliation: Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: Carrie K
authors.initials: CK
authors.lastname: Shapiro-Mendoza
authors.affiliation: National Center for Fatality Review and Prevention, Michigan Public Health Institute, Okemos, Michigan; and.
authors.forename: Esther
authors.initials: E
authors.lastname: Shaw
authors.affiliation: Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: Niu
authors.initials: N
authors.lastname: Tian
authors.affiliation: National Institute of Neurologic Disorders and Stroke, National Institutes of Health, Bethesda, Maryland.
authors.forename: Vicky
authors.initials: V
authors.lastname: Whittemore
authors.affiliation: Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute and.
authors.forename: Jonathan R
authors.initials: JR
authors.lastname: Kaltman
mesh_terms: D001344:Autopsy; D003334:Coroners and Medical Examiners; D004247:DNA / Q000235:genetics; D030561:Databases, Nucleic Acid; D003645:Death, Sudden / Q000453:epidemiology* / Q000209:etiology; D005820:Genetic Testing; D006801:Humans; D007258:Informed Consent; D012042:Registries; D014481:United States / Q000453:epidemiology
chemical_list: D004247:DNA