Utah Population Database

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Introduction

The Utah Population Database (UPDB) 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. For more than 30 years, 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 8 million individuals and supports over 160 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.

Support for the UPDB is provided by the Pedigree and Population Resource (PPR), which is directed by Ken R. Smith, PhD. The Utah Resource for Genetic and Epidemiologic Research (RGE) and an Institutional Review Board (IRB) administer access to files through a review process. PPR is supported by Huntsman Cancer Institute as well as the University of Utah. RGE and the IRB are administered through the Office of the Vice President for Research at the University of Utah.

Shortname

UPDB

IDS compatible

Period

1790 - present

Territory

Utah, US

Contact information

Web Address

www.hci.utah.edu/groups/ppr/

Location

University of Utah, Salt Lake City, Utah

Postal Address

University of Utah, 2000 Circle of Hope, Huntsman Cancer Institute, Salt Lake City, UT 84112

Contact Persons

Ken Smith

Ken.Smith@fsc.utah.edu

Alison Fraser

Citation

Utah Population Database

Questionnaire
Download questionnaire
The questionnaire was submitted on 25 March 2015 by G.Mineau and A. Fraser.

Scope / Status

Original goal

The Utah Population Database (UPDB) is a rich source of information for genetic, epidemiological, demographic and public health studies. For over 40 years, researchers have used this resource to identify and study families that have higher than normal incidence of cancer or other diseases, to analyze patterns of genetic inheritance and to identify specific genetic mutations. Demographic studies have observed and analyzed the trends in the fertility transition and changes in mortality patterns for both infants and adults. The UPDB is the only such database of its kind in the US and one of few such resources in the world. The central component of 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.

Current status

The database is completed; future plans include annual updates from data contributors.

Sample definition

Genealogies: Over 185,000 Utah families were identified on "Family Group Sheets" from the archives at the Utah Family History Library which is maintained by the LDS Church. These sheets contain demographic and kinship information on three generations. For a family to be initially selected for UPDB from the genealogies, at least one member had to have a vital event (birth, marriage, death) on the Mormon Pioneer Trail or in Utah. Some family members have birth dates as early as 1740; most occur after 1780; the genealogy set ends with birth dates about 1970.
Other records: complete statewide records with no sampling; the fields that are available vary over time and fields that are computerized vary over time.
Sampling units: Vital records of births and deaths and decennial censuses represent all individuals in Utah.
Variables used for selection: None
Selection method: All individuals in each data set are included.

Geographic area under observation

Utah for the most part. Genealogies include migrants into Utah; early migrants originated in New England, Missouri, Illinois and Northern Europe. The families tended to settle in Utah and southern Idaho.Census records provide towns and precincts for cities. Genealogy records provide national and cross-national origins for migrants. 1940 Census is for all US.

Realized parts

The UPDB provides access to information on more than 8 million individuals and supports over 160 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.

Keywords

demography, life course, census, genetics, vital records, genealogy

Sources

From year	End year	Source	Explanation
1830	1975	Baptisms	The Church of Jesus Christ of Latter-day Saints (LDS) was organized in New York in 1830. Baptism occurs at age 8 or later. Reported on LDS genealogies.
1790	1975	Marriages from church registers	Reported on LDS genealogies.
		Burials	Reported on LDS genealogies.
1915	2013	Civil birth certificates	Utah 1951-21 and 1947-2004; annual electronic updates.
1978	2010	Civil marriage/divorce certificates	Utah vital records.
1904	2013	Civil death certificates	Utah vital records - annual electronic updates.
1880	1930	Population Census	State of Utah Census: 1880, 1900, 1910, 1920, 1930; US Census 1940.
	2012	Nominative lists	Utah Voter Registration
		Military draft records	Utah World War II Draft Registrations.
1978	2012	Utah fetal death records
2000	2014	Utah Driver License	Annual electronic updates.
1960	2011	Social Security Death Index	For SSNs issued in Utah and Idaho; plus selected others.
1966	2012	Utah Cancer Registry	Annual electronic updates.
1969	2011	Cancer Data Registry of Idaho	Annual electronic updates.
1996	2012	Hospital Discharge Summaries	Annual electronic updates.
1996	2011	Ambulatory Surgery	Annual electronic updates.

Collection procedure

Data collection period: Varies with data set.
Data collection method: State vital records, government census records.
If transcription, how was the transcription done: By individuals and from LDS microfilm.
How was the checking of the transcription done? Double keying.
When was it done?Varies with data set.
Purpose of the transcription: Research and genealogy.
Control methods by researcher: Yes.

Observations

Units of observation

Unit of observation	Explanation	Number
Individuals	All records are individuals records.
Married couples
Families	Individuals have been linked across generations to create multi-generational families.
Households	Census records for 1880, 1900, 1910, 1920, 1930, 1940.

Are there any related observations that are not included in the database?

Genealogies and civil death certificates include the names of parents who may never have resided in Utah. For some years the birth place of parents on death certificates is electronic.

How do the units of observation enter observation?

Individuals. Genealogies: These provide information on full sibships regardless of place of birth so there is no censorship. Vital records: Utah birth records will not include children born in other states. Thus full sibships may not be available on all families. Utah natives, born from period 1921 through 1946 who are not on genealogies, may not be linked to their parents information. Census: Relationship between household members is enumerated. Households. They are observed every 10 years in the census enumeration.

How do the units of observation leave observation?

Individuals. Genealogies: Families or family members that leave Utah may not be followed; we use the Social Security Index and Idaho cancer records to find some. Vital records: Individuals born in Utah who leave the state are not followed; we use the Social Security Index and Idaho cancer records to find some. Some research projects have included additional data, for example, the vital file from Centers for Medicare and Medicaid Services (CMS). Households. No longer observed in census due to migration or death.

Dates estimated

Yes, if an individual is known to have died out of state then the date that they last had an event in Utah and the death date would provide some parameters.

Are some entry or exit dates unknown?

Yes.

Can observations be linked to geographic locations?

Yes

Are the dates and locations of movements within the observation area recorded?

Are all individuals who lived in the households of sample members recorded?

Yes

Linkage

1. Which sources and units of observation have been linked:
Births/Baptisms – Y
Marriages/ Divorces - Y
Deaths/Burials - Y
Census - Y
Utah fatal deaths -Y
SSDI - Y
UCR - Y
CDRI - Y
2. Name of software if used (and its parameters) - IBM web sphere Quality Stage
3. What are the rules for linking? - Probabilistic record linking with programmatic validation.
4. How is each reconstructed person traceable to the original sources /transcribed data? - Keep all original source records and track with unique identifiers.
5. How is linkage represented in the database? - There is a universal identification number. Because one person may have many records, it is imperative that we have one demographic control record (person record) to represent an individual. Otherwise, researchers would have to view many records for one individual and decide which information they wanted from each record. Thus we create a “person record” that is composite of information contained on all the records for a single person. As additional records are linked, the validity and quantity of the information on a given person increases. Rather than link different record sets to each other, a new record set is linked to the composite individuals with information from all sources.
6. Linkage percentage. - Varies with dataset.
7. Quality of linkage (own evaluation) - Excellent.

Variables

Events

Type	Dated	Explanation
Birth	Partly	Genealogies have full birth dates. Utah birth certificates have full birth dates. From 1978 to current the birth certificate have the birth date of the parents, prior to that only the age of the parents was available.
Marriage	Partly	Genealogies have full marriage dates. Utah marriage records: From 1978 – 1988 records have minimal computerized information, listing husband and wife name and age, marriage date, and county of marriage. After 1988 records have more complete information for the husband and wife, including birth date and birth place, education, number of marriages and type of marriage (civil or religious).
Death	Yes	Genealogies have full death dates. Utah death certificates have full death dates.
Migration	No	A general range of years could be imputed from the place information associated with events.

Variables

Birth date, death date, age, gender, marital status, occupation, relationship, race, geographic location.
Head of household, relationship to head, age.

Coding / Reference systems

Occupational titles: Occupational Coding (Occupations and Industry on Births and Death certificates are coded, but incomplete); 1980 Census Occupation and Industry Classification; 1990 Census Occupation and Industry Classification.

These codes apply to occupations for all years, not just 1980 and 1990. An occupation code and industry code were developed for the 1880 census data.

Locations (including geo-referenced systems): Address on Utah driver license has been geocoded. The system used was Universal Transverse Mercator (UTM).

We have eastings and northings; as long as you stay in the same UTM zone, these map to longitude and latitude. Also have census tract and census block related to 2000 census. Vital records contain place codes for city, county and state.

Diagnoses: Risks, complications, malformations on Birth Certificates coded to ICD 9 for 1978-1988.

Diagnoses: Cause of Death on Death Certificates coded to ICD6 (1956-1957), ICD7 (1958-67), ICD8 (1968-78), ICD9 (1979-1998), ICD10 (1904-1933, 1999-2012).

Diagnoses: Cancer Diagnoses coded to International Classification of Diseases for Oncology (ICDO).

Race: Vital records and cancer records have National Center for Health Statistics (NCHS) race codes.

Hispanic classification on vital records and cancer records.

Data representation

Kinship Analysis Tools:
Kinclass: This program rapidly identifies arbitrary classes of relatives for a set of individuals according to a set of criteria, such as first and second-degree relatives who are still alive.
Dynaped: This program takes the output from a control dataset and a kinship dataset, and performs various types of statistical analysis.
The functionality of this program includes
•Calculation of familial disease incidence
•Calculation of familial average phenotypes, e.g. familial excess longevity
•Estimation of founder relative risks via pedigree-structured Poisson regression
•Extension of above methods to alternative inheritance models (e.g. mitochondrial, x-linked, y-linked, imprinting, social)
Descriptive Tools:
Kinship Coefficients: Pairs of individuals are provided and their ancestors are compared to identify a common ancestor. If a common ancestor is identified, a kinship coefficient is calculated to indicate the degree of relatedness.
Pedigree Drawing: Provides all descendants for import into Progeny pedigree drawing program.

Kinship relations

Recording

Genealogies: "Family Group Sheets" from the archives at the Utah Family History Library contain demographic and kinship information on three generations. Vital records: Births and deaths include information on two generations.

Depth of information

The Utah family histories represent pedigrees that may span as many as ten generations. The majority of families living in Utah are represented in this database with a special emphasis on genealogy records of the pioneers of Utah and their Utah descendants. Merging data from genealogies and birth certificates allows information for new generations to be added and most families can be linked across five generations. For example, looking at all individuals born in Utah in 1950, 79 percent have grandparent information available in UPDB and 67 percent have five or more previous generations documented in the UPDB.

Publications

1.Main publications about the database itself.

Bean, L.L., May, D., & Skolnick, M. (1978). The Mormon historical demography project. Historical Methods, 45-53.
Skolnick, M., Bean, L., Dintelman, S., & Mineau, G. (1979). A computerized family history database system. Sociology and Social Research, 63, 506-523.
Mineau, G.P., Anderton, D.L., & Bean, L.L. (1989). Description and evaluation of linkage of the 1880 census to family genealogies with implications for Utah fertility research. Historical Methods, 22, 144-157.
Wylie, J.E., & Mineau, G.P. (2003). Biomedical databases: protecting privacy and promoting research. Trends in Biotechnology, 21(3), 113-116.
Duvall, S.L., Fraser, A.M., Rowe, K., Thomas, A., & Mineau, G.P. (2012). Evaluation of record linkage between a large healthcare provider and the Utah Population Database. Journal of the American Medical Informatics Association, 19(1), 54-59.

2.Main or exemplary publications on research based on the database.

Anderton, D.L., & Bean L. (1985). Birth spacing and fertility limitation: a behavioural analysis of a nineteenth century frontier population. Demography, 22(2), 169-183.
Miki, Y., Swensen, J., Shattuck-Eidens, D., et al. (1994). A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science, 266, 66-71.
Jorde, L.B. (2001). Consanguinity and prereproductive mortality in the Utah Mormon population. Human Heredity, 52(2), 61-65.
Kerber, R.A., O'Brien, E., Smith, K.R., & Cawthon, R.M. (2001). Familial excess longevity in Utah genealogies. Journal of Gerontology: Biological Sciences, B130-B139
Neklason, D.W., Stevens, J., Boucher, K.M., Kerber, R.A., Matsunami, N., Barlow, J., Mineau, G., Leppert, M.F., & Burt, R.W. (2008). American founder mutation for attenuated familial adenomatous polyposis. Clinical Gastroenterology and Hepatology, 6(1), 46-52.

European Historical Population Samples Network

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