Overview of the Utah Population Database

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• Overview of the Utah Population Database
• Geraldine Mineau, PhD
• University of Utah

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Utah Population Database (UPDB)

• University of Utah research resource
• Over 30 years of research
• About 9.0 million documents
• 65 approved projects

http//www.hci.utah.edu/groups/ppr/
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UPDB Resource

• Conduct studies that require individual and
  familial medical data
• Family histories (mainly Utah and SE Idaho
  families)
• Genealogies Family History Library, maintained
  by LDS Church
• Family reconstitution Create families from
  Utahs vital records
• 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
• Vital records cause of death and medical details
  from birth certificates
• University of Utah Health Sciences medical
  records

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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

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Sources for Data
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Records Available in UPDB

• Genealogy (over 170,000 family group
  sheets) 1,599,292
• Utah birth certificates (1915-21,
  1947-2005) 2,088,389
• Utah marriage and divorce (1978-2004)
  783,993
• Utah death certificates (1904-2005) 707,971
• Social security death index 479,311
• Utah Cancer Registry (in situ and invasive)
  216,266
• Cancer Data Registry of Idaho 124,079
• Driver License 2,773,562
• Total 8.9 million
• Linked into 6.5 million person records and
  across generations

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UPDB 5.54 million individuals by 10-year birth
cohorts from about 1740 to 2005
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UPDB 3.93 million individuals In families of 2
to 11 generations
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Utah Family, Circa 1900
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3
10
2
12
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F
M
5
1
4
Father (F), Mother (M) and children by birth
order Married 1853, 12 Children, 3 Infant deaths
(6, 9, 11)
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Utah Family in UPDB
Maternal side
Paternal side

• Spans 11 generations from 1807 to 2005
• Couple (in picture) 4,289 descendants (3,821
  living)
• Paternal side 6,510 descendants (5,714 living)
• Maternal side 19,350 descendants (16,973 living)

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Utah Extraordinary Research Opportunity

• Identify large families with affected family
  members where the genetic relationships are
  known.
• Longitudinal information - Across lifetime and
  generations
• Merge genetics with demography/epidemiology
• Utah population 2,547,389 (July 2005)
• Only such resource in the US

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Utah Extraordinary Research Opportunity

• Identify predisposition to disease
• BRCA1 and BRCA2 breast cancer mutations
• P16 gene mutation in melanoma cancer
• APC gene mutation in colon cancer
• Prostate cancer susceptibility gene
• 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

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Sources of Medical Information

• Part of UPDB
• Utah and Idaho state-wide cancer registries
• Cause of death on Utah death certificates
• Birth details on Utah birth certificates
• Utah Birth Defects Network
• NIH Proposal - Utah Department of Health Claims
  datasets
• 1996- 2008 Hospital Inpatient Discharge,
  Ambulatory Surgery, Emergency Department
  Encounters
• Linked to UPDB - Master Subject Index
• U of U Health Sciences Center (UUHS), Enterprise
  data warehouse
• Intermountain Health Care, Enterprise data
  warehouse summer 2007

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U of U Health Sciences Enterprise Data Warehouse

• Patient Data - 1990 to present
• 1.6 million patient demographic records
• Inpatient and outpatient encounters
• Includes over 200 disparate source systems
• Clinical Data - 1993 to present
• Cerner and EPIC EMR data
• Radiology, Lab, Micro and Pathology Results
• Inpatient medications orders and outpatient
  prescriptions
• Documentation- clinic notes, medications,
  problems, allergies
• Diagnosis and procedure data
• Financial Data 1990 to present
• Charge and reimbursement data
• Facility costs
• Payroll data

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Beyond Cancer New Research Opportunities

• Access to University of Utah Medical Records
• Matched 1.0 million patient demographic records
• 16 new research projects, e.g.
• Cardiovascular mortality in renal transplant
  patients
• Fibromyalgia and chronic fatigue syndrome
• Hereditary angioneurotic edema
• Inflammatory bowel disease
• Macular degeneration and other eye diseases
• Polycystic ovary syndrome
• Psoriasis
• Rheumatoid arthritis
• Type II diabetes

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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 Alzheimers Disease

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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.

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Acknowledge

• Jean Wylie, MS Director, Utah Resource of
  Genetic and Epidemiologic Research
• Richard Kerber, PhD - Senior Scientist with
  UPDB
• UPDB Staff HCI Informatics Staff
• Alison Fraser, MSPH Cindy Spigle, BACS
• Carole Schaefer, BACS   Dinny Berry, MS
• Richard Pimentel, MSCS Robb Cundick, PhD
• Andy Hammer, BSCS
• Jahn Barlow, MPA
• Anne Zeller, BA
• Emily Smith, MA
• Solange Gomes, BA