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Utah Population Database (UPDB)

Utah Population Database (UPDB). University of Utah research resource Over 30 years of research About 14.5 million documents 104 approved projects. http://www.hci.utah.edu/groups/ppr/. UPDB Resource. Family histories (mainly Utah and SE Idaho families)

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Utah Population Database (UPDB)

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  1. Utah Population Database (UPDB) • University of Utah research resource • Over 30 years of research • About 14.5 million documents • 104 approved projects http://www.hci.utah.edu/groups/ppr/

  2. UPDB Resource • Family histories (mainly Utah and SE Idaho families) • Genealogies: Records from Family History Library, maintained by Church of Jesus Christ of Latter-day Saints • Family reconstitution: Create families from Utah’s vital records: birth, marriage and death • Create maternal and paternal birth histories • Link across generations - 11 generations for some families • Medical information is linked to family histories • State wide cancer records • State wide inpatient hospital discharge data • Vital records: cause of death and medical details from birth certificates • University of Utah Health Sciences and Intermountain Healthcare medical records Mineau 4/02/10

  3. Records Available in UPDB Mineau 4/02/10

  4. UPDB – 6.4 million individuals by 10-year birth cohorts from about 1740 to 2008 Mineau 4/02/10

  5. UPDB – 4.22 million individuals In families of 2 to 11 generations Mineau 4/02/10

  6. Utah Family, Circa 1900 7 3 10 2 12 8 F M 5 1 4 Father (F), Mother (M) and children by birth order Married 1853, 12 children, 3 infant deaths Mineau 4/02/10

  7. 1807 1802 1817 1819 1807 1802 1817 1819 1889 1870 1854 1850 1889 1870 1854 1850 Canada New York England Connecticut Canada New York England Connecticut 8th of 15 children 8th of 15 children 1st of 5 children 1st of 5 children M F M F 1837 1835 1837 1835 1917 1915 1917 1915 1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4 5 6 7 8 9 10 11 12 1854 1855 1857 1859 1861 1863 1864 1867 1869 1870 1872 1874 1854 1855 1857 1859 1861 1863 1864 1867 1869 1870 1872 1874 1932 1940 1930 1931 1892 1863 1939 1952 1869 1902 1872 1943 1932 1940 1930 1931 1892 1863 1939 1952 1869 1902 1872 1943 Utah Family in UPDB • Spans 11 generations from 1807 to 2008 • Couple (in picture): 5,315 descendants (4,745 living) • Paternal side: 8,207 descendants (7,256 living) • Maternal side: 23,825 descendants (21,013 living) Maternalside Paternalside Mineau 4/02/10

  8. Extraordinary Research Opportunity • Maintain longitudinal data - Across an individual’s lifetime and generations • Merge genetics with demography • Conduct studies that analyze familial data • Identify large families with affected members where genetic relationships are known • Look for predisposition to disease • Low inbreeding rate • Large initial founding population • High rates of immigration from diverse outside populations • Extrapolate findings to broad spectrum of US and Western and Northern European populations Mineau 4/02/10

  9. Examples of Types of Studies • Cancer Studies • Cancer genetics: breast, colon, melanoma, pancreas, prostate • Familial aggregation of cancers • Obstetric complications and childhood studies • Preeclampsia and preterm births • Birth defects, autism, juvenile idiopathic arthritis • Chronic and other diseases and conditions • Diabetes, psoriasis, rheumatoid arthritis, inflammatory bowel disease • Macular degeneration, interstitial lung disease, mullerian anomalies, chronic pain, aneurysms • Aging and mortality • Longevity • Memory in aging and Alzheimer’s Disease Mineau 4/02/10

  10. Security and Confidentiality • Not a public database – for research only • Researchers have no electronic access to identifying information • State of the art database • Policies and procedures on confidentiality • All projects are reviewed by IRB and data contributions • Require researchers to sign confidentiality agreements • Contact of potential subjects by an appropriate third party Wylie and Mineau, Biomedical databases: protecting privacy and promoting research. Trends in Biotechnology, March, 2003. Mineau 4/02/10

  11. Administration for UPDB Utah Resource for Genetic and Epidemiologic Research http://www.research.utah.edu/rge/ • 1982 Executive Order of Governor established RGE • A data resource for the collection, storage, study and dissemination of medical and related information and for the purpose of reducing morbidity • 2003 Utah State Code 26-15, modified to increase confidentiality of familial and other information • RGE reports to Associate Vice President for Research, University of Utah Mineau 4/02/10

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