The Utah Population Database (UPDB) at Huntsman Cancer Institute 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. Since the mid 1970s, 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.
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 11 million individuals and supports approximately 400 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.
Highlights of the UPDB:
- It has contributed to important gene discoveries including those for colon cancer (APC), breast cancer (BRCA1), melanoma (p16), and cardiac arrhythmia (KCNH2)
- It is linked to the major health care providers in the state – Intermountain Healthcare and the University of Utah
- It covers the entire state including rural and frontier counties
- Every state and nearly every country is represented in the database based on their birth place
Support for the UPDB is provided by the Pedigree and Population Resource (PPR), which is directed by Nicola Camp, PhD. PPR is supported by Huntsman Cancer Institute and the University of Utah. The Utah Resource for Genetic and Epidemiologic Research (RGE) and an Institutional Review Board (IRB) oversee access to data through an independent review process. RGE and the IRB are administered through the Office of Research Integrity and Compliance at the University of Utah.