The Utah Population Database (UPDB) holds approximately 12 million records in which an extensive set of Utah genealogies is linked to large sets of medical records (including cancer records) and other types of data. It supports more than 90 research projects and is a rich research resource for genetic, epidemiological, demographic, and public health studies. In addition to genealogies and Cancer Registry data from Utah and Idaho, UPDB is linked to inpatient hospital records and vital records, including Utah death certificates. These data allow the identification of familial clustering of cancer. Studies may have a research design that incorporates kinship/pedigree structure or that uses a case control outcomes approach. Software has been developed that readily provides researchers information about cancer risk, segregation patterns, and pedigree size. The goals of the UPDB Shared Resource are to do the following: Maintain the UPDB research infrastructure by annually updating and linking statewide records, including cancer, vital records, driver license data, and inpatient hospital events Facilitate access to medical information in the enterprise data warehouses of the University of Utah Health Sciences Center and Intermountain Healthcare, as well as the Utah Department of Health Maintain pedigree infrastructure and analysis tools Provide access to UPDB and expertise in its use to support research projects Provide ongoing information such as deaths and cancer recurrence to research projects These activities require resources beyond the scope of any single research project. The UPDB Shared Resource makes large datasets and multigenerational pedigrees available, while carefully protecting the privacy of individual-level data. All projects require IRB approval. In addition, the Utah Resource for Genetic and Epidemiology Research administers access to UPDB through another review process. UPDB is a focal point of transdisciplinary and collaborative cancer research, since gene discovery involves both basic and clinical researchers. Investigators from multiple Huntsman Cancer Institute Programs and many University departments use the UPDB. The UPDB is the only such database in the United States and one of few such resources in the world. Geraldine Mineau, PhD, has directed the UPDB since 1994. UPDB is a Cancer Center-managed facility with supervision from HCI Directors. There is a Faculty Advisory Committee; a survey has been used to assess user satisfaction. UPDB is located in Cancer Center space with ready access to investigators. In 2008, 45 percent of UPDB usage was by members with peer-reviewed funding. Funds are requested from the CCSG to cover 10 percent ($139,875) of the proposed UPDB budget.
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