The Utah Resource for Genetic and Epidemiologic Research (RGE) was established by Executive Order of the Governor of Utah on July 14, 1982, as a “data resource for the collection, storage, study, and dissemination of medical and related information” for “the purpose of reducing morbidity or mortality, or for the purpose of evaluating and improving the quality of hospital and medical care.”
RGE governs access to the Utah Population Database (UPDB), which includes family history records, vital records, cancer registry records, driver license records, and others. These records are linked together to form multi-generational pedigrees as well as longitudinal person-level data. The records in the UPDB have also been linked to external data resources, such as the electronic health records at the University of Utah Health Sciences Center and Intermountain Healthcare. The data in the UPDB and the links to external data sets are maintained by the Pedigree and Population Resource, which also provides kinship analysis and other data services. RGE is administered through the Office of the Vice President for Research at the University of Utah.
Limited access to aggregate data in UPDB for research preparation is now available through the UPDB Limited Query Tool, which was developed by the Pedigree and Population Resource and the Research Informatics Resource at Huntsman Cancer Institute.
More detailed access to these data resources for research purposes requires review and approval by the RGE Review Committee and the appropriate Institutional Review Board(s). Applications must be submitted through the University Electronic Research Integrity and Compliance Information (ERICA) system. All access is project-specific and must be renewed annually. Prior to accessing any individual records or pedigrees (with or without identifiers), personnel must be listed on the RGE approved project application and must sign the RGE Confidentiality Agreement. All publications resulting from the use of the data must be submitted to RGE for review prior to publication.
Applicants are encouraged to read the Information for Investigators and consult with Dr. Ken Smith, Pedigree and Population Resource Director, or Jahn Barlow, RGE Director, for assistance with preparing an application.