Last data update: Jun 24, 2024. (Total: 47078 publications since 2009)
Records 1-2 (of 2 Records) |
Query Trace: Kobau Rosemarie [original query] |
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The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality.
Burns KM , Bienemann L , Camperlengo L , Cottengim C , Covington TM , Dykstra H , Faulkner M , Kobau R , Erck Lambert AB , MacLeod H , Parks SE , Rosenberg E , Russell MW , Shapiro-Mendoza CK , Shaw E , Tian N , Whittemore V , Kaltman JR . Pediatrics 2017 139 (3) ![]() 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. |
Monitoring population health for Healthy People 2020: evaluation of the NIH PROMIS((R)) Global Health, CDC Healthy Days, and satisfaction with life instruments
Barile John P , Reeve Bryce B , Smith Ashley Wilder , Zack Matthew M , Mitchell Sandra A , Kobau Rosemarie , Cella David F , Luncheon Cecily , Thompson William W . Qual Life Res 2013 22 (6) 1201-11 PURPOSE: Healthy People 2020 identified health-related quality of life and well-being (WB) as indicators of population health for the next decade. This study examined the measurement properties of the NIH PROMIS((R)) Global Health Scale, the CDC Healthy Days items, and associations with the Satisfaction with Life Scale. METHODS: A total of 4,184 adults completed the Porter Novelli's HealthStyles mailed survey. Physical and mental health (9 items from PROMIS Global Scale and 3 items from CDC Healthy days measure), and 4 WB factor items were tested for measurement equivalence using multiple-group confirmatory factor analysis. RESULTS: The CDC items accounted for similar variance as the PROMIS items on physical and mental health factors; both factors were moderately correlated with WB. Measurement invariance was supported across gender and age; the magnitude of some factor loadings differed between those with and without a chronic medical condition. CONCLUSIONS: The PROMIS, CDC, and WB items all performed well. The PROMIS items captured a broad range of functioning across the entire continuum of physical and mental health, while the CDC items appear appropriate for assessing burden of disease for chronic conditions and are brief and easily interpretable. All three measures under study appear to be appropriate measures for monitoring several aspects of the Healthy People 2020 goals and objectives. |
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