UTAH POPULATION DATABASE SHARED RESOURCE ABSTRACT The Utah Population Database Shared Resource (UPDB), established at Huntsman Cancer Institute (HCI) in 1994, contributes to HCI?s mission by providing state-of-the-art data and analytic services to support genetic, epidemiologic, demographic, public health, behavioral, and health services research. UPDB provides privacy- protected access to unique data sets derived from one of the world?s richest sources of linked individual-level genealogical, medical, vital, and geospatial information, enabling diverse biomedical investigations, including statewide population analyses. The data include over 11 million individuals linked into pedigrees covering up to 17 generations. UPDB?s aims are 1) to assemble state-of-the-art integrated genealogical, medical, and vital records and provide data analysis and interpretation for cancer investigations; and 2) to support the scientific research objectives of the Cancer Center by providing access to tailored complex data sets and advanced analytic tools. UPDB has been directed by Ken Smith, PhD, since 2010. Management of UPDB within the Cancer Center ensures that this Resource addresses the needs of Cancer Center members. The services provided by UPDB are unique and do not exist at any other National Cancer Institute cancer center. UPDB adds value to cancer research by: 1) providing data and analytic tools to identify high-risk cancer families, 2) adding extensive geospatial information that permits linkages to environmental variables, and 3) offering guidelines for the efficient and cost-effective recruitment of subjects into research projects. UPDB infrastructure enables Cancer Center members to exploit otherwise unavailable key data resources, including the University of Utah Health and Intermountain Healthcare data warehouses. Cancer Center members with peer-reviewed funding comprise 11% of the users, and total cancer-related usage exceeds 48%. Since 2014, UPDB data have been used in 61 cancer-focused, Institutional Review Board (IRB)-approved projects that have yielded 118 publications. UPDB is an unparalleled biomedical research resource. It provides outstanding data quality on large multi- generational pedigrees, linked to the Surveillance, Epidemiology, and End Results (SEER) Utah Cancer Registry and most of the state?s electronic medical records. The data in UPDB span decades and are enhanced by other high-quality databases and geocodes, exposed to rigorous data quality control techniques, and made available to Cancer Center members with IRB-approved protocols at a reasonable cost. UPDB enhances the productivity and creativity of HCI?s members and contributes to the Cancer Center?s overall mission to understand the causes of cancer and promote its prevention within HCI?s catchment area, the State of Utah.
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