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Overview

The Utah Population Database (UPDB) at the University of Utah is one of the world’s richest sources of in-depth information that supports research on genetics, epidemiology, demography, and public health. For more than 30 years, researchers at the University of Utah and other institutions have used UPDB to identify and study individuals and families that have higher than normal incidence of cancer or other diseases, to analyze patterns of genetic inheritance, and to identify specific genetic mutations. In addition, demographic studies have shown trends in fertility transition and changes in mortality patterns for both infants and adults.

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The UPDB is the only database of its kind in the United States and one of few such resources in the world. The central component of the UPDB is an extensive set of Utah family histories, in which family members are linked to demographic and medical information. The UPDB includes diagnostic records about cancer, cause of death, and medical details associated with births. It also includes claims data from statewide inpatient hospital discharge records as well as ambulatory surgery records from hospital outpatient departments and ambulatory surgery centers. The UPDB provides access to information on more than 7.3 million individuals and supports over 100 research projects. This information can only be used for biomedical and health-related research; the privacy of individuals represented in these records and confidentiality of the data is strictly protected.

Support for the UPDB is provided by the Pedigree and Population Resource (PPR), which is directed by Ken R. Smith, PhD. The Utah Resource for Genetic and Epidemiologic Research (RGE) and an Institutional Review Board (IRB) administer access to files through a review process. PPR is supported by Huntsman Cancer Institute as well as the University of Utah. RGE and the IRB are administered through the Office of the Vice President for Research at the University of Utah.