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Access to Data

The multiple linked data sets in the Utah Population Database (UPDB) provide a rich resource of information for genetic, epidemiological, demographic, and public health studies. The extensive family histories available allow the identification of familial clustering of disease or outcomes. These diseases may include cancers diagnosed through the Utah or Idaho state registries, causes of death identified through death certificates, and reproductive outcomes identified through birth certificates or any other disease identified through clinical records and linked to the genealogy.

With RGE and IRB approval, a researcher may provide the staff with identifying information on a set of research participants. UPDB staff can then determine the degree of relatedness of these individuals. This may aid in identifying potentially interesting families to study. Whenever UUHSC or Intermountain Healthcare medical record numbers are available for research participants, researchers are encouraged to use the existing links between the UPDB and the UUHSC and/or Intermountain electronic medical records to the extent possible.

Studies typically incorporate the kinship or pedigree structure as part of the research design; however all data sets are available to be studied independently of the family history records, either alone or in combinations of data sets available in the UPDB.

All research projects require Institutional Review Board (IRB) and Resource for Genetic and Epidemiologic Research (RGE) approval.

The Utah Resource for Genetic and Epidemiologic Research (RGE) administers access to the UPDB and specific sets of records through a review process of the project proposal. University of Utah researchers can complete the RGE application as part of the IRB application process in ERICA.

Contact:
Jahn Barlow
(801) 581-6351
jahn.barlow@hsc.utah.edu

RGE Website

Publications:
Any publication referring to the Utah Population Database must be reviewed and approved by Genetic and Epidemiologic Research (RGE) prior to publication. It should also contain one of the following acknowledgments.

For non-cancer research: Partial support for all datasets within the Utah Population Database was provided by the University of Utah Huntsman Cancer Institute and the Huntsman Cancer Institute Cancer Center Support grant, P30 CA2014 from the National Cancer Institute.

For cancer related research: Partial support for all datasets within the Utah Population Database was provided by the University of Utah Huntsman Cancer Institute and the Huntsman Cancer Institute Cancer Center Support grant, P30 CA2014 from the National Cancer Institute.  Support for the Utah Cancer Registry is provided by Contract No HHSN 261201000026C from the National Cancer Institute with additional support from the Utah Department of Health.