Abstract

This dataset is the American Family Cohort (AFC) Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) dataset.

This dataset is a medium risk (confidential) de-identified dataset (OMOP DID).

Note: A few updates have been made to the dataset in the August 2024 release. Please check the "Update Notes" section for more details.

Usage

For more details please go to:

https://ohdsi.github.io/CommonDataModel/cdm54.html

AFC OMOP Specifications

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Update Notes

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BackgroundAs breast cancer represents a major morbidity and mortality burden in the U.S., with about one in eight women developing invasive breast cancer over her lifetime, accurate low-cost screening is an important public health issue. First-degree family history, often simplified as a dichotomous or three-level categorical variable (0/1/>1) based on number of affected relatives, is an important risk factor for many conditions. However, detailed family structure information such as the total number of first-degree relatives, and for each, their current or death age, and age at diagnosis are also important for risk prediction.MethodsWe develop a family history score under a Bayesian framework, based on first-degree family structure. We tested performance of the proposed score using data from a large prospective cohort study of women with a first-degree breast cancer family history. We used likelihood ratio tests to evaluate whether the proposed score added additional information to a Cox model with known breast cancer risk factors and the three-level family history variable. We also compared prediction performance through Receiver Operating Characteristic (ROC) curves and goodness-of-fit testing.ResultsOur proposed Bayesian family history score improved fit compared to the commonly used three-level family history score, both without and with adjustment for other risk factors (likelihood ratio tests p = 0.003 without adjustment for other risk factors, and p = 0.007 and 0.009 under adjustment with two candidate sets of risk factors). AUCs of ROC curves for the two models were similar, though in all cases were higher after addition of the BFHS.ConclusionsCapturing detailed family history data through the proposed family history score can improve risk assessment and prediction. Such approaches could enable better-targeted personalized screening schedules and prevention strategies.

The Jackson Heart Study (JHS) is a population-based longitudinal study based in Jackson, Mississippi that investigates risk factors for cardiovascular disease among African Americans. It is a collaborative research project by the University of Mississippi Medical Center, Jackson State University, and Tougaloo College. The primary objective is to investigate environmental and genetic factors associated with cardiovascular disease in African Americans in order to better address health disparities. The JHS is a community-based observational study of 5,306 African American adults in the 3 counties which make up the Jackson metropolitan area: Hinds, Madison, and Rankin.

Data and biospecimens have been collected from 5,306 participants, including a nested family cohort of 1,498 members from 264 families. The age at enrollment for the unrelated participants ranged from 35 to 84 years old. The family cohort included related individuals who were at least 21 years old at the time of enrollment. Annual follow-up interviews and health surveillance are ongoing.

The Future of Families and Child Wellbeing Study (FFCWS, formerly known as the Fragile Families and Child Wellbeing Study) follows a cohort of nearly 5,000 children born in large, U.S. cities between 1998 and 2000. The study oversampled births to unmarried couples; and, when weighted, the data are representative of births in large U.S. cities at the turn of the century. The FFCWS was originally designed to address four questions of great interest to researchers and policy makers: What are the conditions and capabilities of unmarried parents, especially fathers? What is the nature of the relationships between unmarried parents? How do children born into these families fare? How do policies and environmental conditions affect families and children? The FFCWS consists of interviews with mothers, fathers, and/or primary caregivers at birth and again when children are ages 1, 3, 5, 9, 15, and 22. The parent interviews collected information on attitudes, relationships, parenting behavior, demographic characteristics, health (mental and physical), economic and employment status, neighborhood characteristics, and program participation. Beginning at age 9, children were interviewed directly (either during the home visit or on the telephone). The direct child interviews collected data on family relationships, home routines, schools, peers, and physical and mental health, as well as health behaviors. A collaborative study of the FFCWS, the In-Home Longitudinal Study of Pre-School Aged Children (In-Home Study) collected data from a subset of the FFCWS Core respondents at the Year 3 and 5 follow-ups to ask how parental resources in the form of parental presence or absence, time, and money influence children under the age of 5. The In-Home Study collected information on a variety of domains of the child's environment, including: the physical environment (quality of housing, nutrition and food security, health care, adequacy of clothing and supervision) and parenting (parental discipline, parental attachment, and cognitive stimulation). In addition, the In-Home Study also collected information on several important child outcomes, including anthropometrics, child behaviors, and cognitive ability. This information was collected through interviews with the child's primary caregiver, and direct observation of the child's home environment and the child's interactions with his or her caregiver. Similar activities were conducted during the Year 9 follow-up. At the Year 15 follow-up, a condensed set of home visit activities were conducted with a subsample of approximately 1,000 teens. Teens who participated in the In-Home Study were also invited to participate in a Sleep Study and were asked to wear an accelerometer on their non-dominant wrist for seven consecutive days to track their sleep (Sleep Actigraphy Data) and that day's behaviors and mood (Daily Sleep Actigraphy and Diary Survey Data). An additional collaborative study collected data from the child care provider (Year 3) and teacher (Years 9 and 15) through mail-based surveys. Saliva samples were collected at Year 9 and 15 (Biomarker file and Polygenic Scores). The Study of Adolescent Neural Development (SAND) COVID Study began data collection in May 2020 following the onset of the COVID-19 pandemic. It included online surveys with the young adult and their primary caregiver. The FFCWS began its seventh wave of data collection in October 2020, around the focal child's 22nd birthday. Data collection and interviews continued through January 2024. The Year 22 wave included a young adult (YA) survey with the original focal child and a primary caregiver (PCG) survey. Data were also collected on the children of the original focal child (referred to as Generation 3, or G3). Documentation for these files is available on the FFCWS website located here. For details of updates made to the FFCWS data files, please see the project's Data Alerts page. Data collection for the Future of Families and Child Wellbeing Study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) of the National Institutes of Health under award numbers R01HD36916, R01HD39135, and R01HD40421, as well as a consortium of private foundations.

Descriptive, longitudinal study including direct assessments, classroom observation, parent and teacher interviews, for a nationally represenative sample of Head Start Children

The COVID-19 pandemic has dramatically altered family life in the United States. Over the long duration of the pandemic, parents had to adapt to shifting work conditions, virtual schooling, the closure of daycare facilities, and the stress of not only managing households without domestic and care supports but also worrying that family members may contract the novel coronavirus. Reports early in the pandemic suggest that these burdens have fallen disproportionately on mothers, creating concerns about the long-term implications of the pandemic for gender inequality and mothers’ well-being. Nevertheless, less is known about how parents’ engagement in domestic labor and paid work has changed throughout the pandemic, what factors may be driving these changes, and what the long-term consequences of the pandemic may be for the gendered division of labor and gender inequality more generally. The Study on U.S. Parents’ Divisions of Labor During COVID-19 (SPDLC) collects longitudinal survey data from partnered U.S. parents that can be used to assess changes in parents’ divisions of domestic labor, divisions of paid labor, and well-being throughout and after the COVID-19 pandemic. The goal of SPDLC is to understand both the short- and long-term impacts of the pandemic for the gendered division of labor, work-family issues, and broader patterns of gender inequality. Survey data for this study is collected using Prolifc (www.prolific.co), an opt-in online platform designed to facilitate scientific research. The sample is comprised U.S. adults who were residing with a romantic partner and at least one biological child (at the time of entry into the study). In each survey, parents answer questions about both themselves and their partners. Wave 1 of SPDLC was conducted in April 2020, and parents who participated in Wave 1 were asked about their division of labor both prior to (i.e., early March 2020) and one month after the pandemic began. Wave 2 of SPDLC was collected in November 2020. Parents who participated in Wave 1 were invited to participate again in Wave 2, and a new cohort of parents was also recruited to participate in the Wave 2 survey. Wave 3 of SPDLC was collected in November 2021. Parents who participated in either of the first two waves were invited to participate again in Wave 3, and another new cohort of parents was also recruited to participate in the Wave 3 survey. This research design (follow-up survey of panelists and new cross-section of parents at each wave) will continue through 2024, culminating in six waves of data spanning the period from March 2020 through September 2024. An estimated total of approximately 6,500 parents will be surveyed at least once throughout the duration of the study. SPDLC data will be released to the public two years after data is collected; Wave 1 will be publicly available in April 2022, Wave 2 will be publicly available in November 2022, Wave 3 will be publicly available in November 2023, etc. Data will be available to download in both SPSS (.sav) and Stata (.dta) formats, and the following data files will be available: (1) a data file for each individual wave, which contains responses from all participants in that wave of data collection, (2) a longitudinal panel data file, which contains longitudinal follow-up data from all available waves, and (3) a repeated cross-section data file, which contains the repeated cross-section data (from new respondents at each wave) from all available waves. Codebooks for each survey wave and a detailed user guide describing the data are also available.

With an emphasis on reaching historically underrepresented populations, the All of Us Research Program recruits adults aged 18 and above across the United States to share their health data to enable new insights into human health and research on precision medicine. Participants contribute electronic health records (EHR), survey responses, biospecimens, wearable devices (biometrics), and physical measurements.

The six All of Us surveys assess the areas listed below:

• Basic demographic information
• Lifestyle/substance use (i.e., tobacco, alcohol, and recreational drugs)
• Overall health (general health status, daily activities, and women’s health)
• Medical history (medical conditions and approximate age of diagnosis)
• Family medical history (medical history of immediate biological family members)
• Health care access and utilization (self-reported use of various health services)

There are currently three tiers of data access.

• Public Tier: Anonymized, aggregate data that can be viewed with the Data Browser.
• Registered Tier: Contains individual-level data and is available only to approved researchers on the Researcher Workbench. Authorized users also have access to tools such as the Cohort Builder, Jupyter Notebooks, and Dataset Builder.
• Controlled Tier: Includes genomic data in the form of whole genome sequencing and genotyping arrays, demographic data fields from EHRs and surveys that are suppressed in other tiers, and unshifted dates.

The Survey on Health, Well-Being, and Aging in Latin America and the Caribbean (Project SABE) was conducted during 1999 and 2000 to examine health conditions and functional limitations of persons aged 60 and older in the countries of Argentina, Barbados, Brazil, Chile, Cuba, Mexico, and Uruguay, with special focus on persons over 80 years of age. Project SABE was administered in the official language of each country: Spanish in Buenos Aires (Argentina), Mexico City (Mexico), Santiago (Chile), Havana (Cuba), and Montevideo (Uruguay), English in Bridgetown (Barbados), and Portuguese in Sao Paulo (Brazil). Goals of the project were to (a) describe the health conditions of older adults (aged 60 and older with special focus on persons over 80) with regard to chronic and acute diseases, disability, and physical and mental impairment, (b) evaluate the extent to which older adults used and had access to health care services, including services that are outside the formal system (local healers, traditional medicine), (c) evaluate the proportional contribution by principal sources of support -- relatives and family networks, public assistance, and private resources (income, assets) -- towards meeting the health-related needs of older adults, (d) evaluate access to health insurance offered by private organizations, governmental institutions, and mixed systems, as well as the extent to which that insurance was actually used, (e) analyze the differentials in the self-evaluation of health conditions, access to health care, and sources of support with regard to socioeconomic group, gender, and birth cohort, (f) evaluate the relationships between strategic factors -- health-related behavior, occupational background, socioeconomic status, gender, and cohort -- and health conditions, according to the health evaluation at the time of the survey, and (g) carry out comparative analyses in countries that share similar characteristics but that differ with regard to such factors as the role of family support, public assistance, access to health services, and health-related behavior and exposure to risk. Demographic variables include age, sex, race, level of education, birthplace, religion, ethnic group, marital status, and income. Also examined were cognitive status, health status, functional status, nutritional status, and use and accessibility of services

The COVID-19 pandemic has dramatically altered family life in the United States. Over the long duration of the pandemic, parents had to adapt to shifting work conditions, virtual schooling, the closure of daycare facilities, and the stress of not only managing households without domestic and care supports but also worrying that family members may contract the novel coronavirus. Reports early in the pandemic suggest that these burdens have fallen disproportionately on mothers, creating concerns about the long-term implications of the pandemic for gender inequality and mothers’ well-being. Nevertheless, less is known about how parents’ engagement in domestic labor and paid work has changed throughout the pandemic, what factors may be driving these changes, and what the long-term consequences of the pandemic may be for the gendered division of labor and gender inequality more generally. The Study on U.S. Parents’ Divisions of Labor During COVID-19 (SPDLC) collects longitudinal survey data from partnered U.S. parents that can be used to assess changes in parents’ divisions of domestic labor, divisions of paid labor, and well-being throughout and after the COVID-19 pandemic. The goal of SPDLC is to understand both the short- and long-term impacts of the pandemic for the gendered division of labor, work-family issues, and broader patterns of gender inequality. Survey data for this study is collected using Prolifc (www.prolific.co), an opt-in online platform designed to facilitate scientific research. The sample is comprised U.S. adults who were residing with a romantic partner and at least one biological child (at the time of entry into the study). In each survey, parents answer questions about both themselves and their partners. Wave 1 of SPDLC was conducted in April 2020, and parents who participated in Wave 1 were asked about their division of labor both prior to (i.e., early March 2020) and one month after the pandemic began. Wave 2 of SPDLC was collected in November 2020. Parents who participated in Wave 1 were invited to participate again in Wave 2, and a new cohort of parents was also recruited to participate in the Wave 2 survey. Wave 3 of SPDLC was collected in October 2021. Parents who participated in either of the first two waves were invited to participate again in Wave 3, and another new cohort of parents was also recruited to participate in the Wave 3 survey. This research design (follow-up survey of panelists and new cross-section of parents at each wave) will continue through 2024, culminating in six waves of data spanning the period from March 2020 through October 2024. An estimated total of approximately 6,500 parents will be surveyed at least once throughout the duration of the study. SPDLC data will be released to the public two years after data is collected; Waves 1 and 2 are currently publicly available. Wave 3 will be publicly available in October 2023, with subsequent waves becoming available yearly. Data will be available to download in both SPSS (.sav) and Stata (.dta) formats, and the following data files will be available: (1) a data file for each individual wave, which contains responses from all participants in that wave of data collection, (2) a longitudinal panel data file, which contains longitudinal follow-up data from all available waves, and (3) a repeated cross-section data file, which contains the repeated cross-section data (from new respondents at each wave) from all available waves. Codebooks for each survey wave and a detailed user guide describing the data are also available.

The purpose of the study was to prospectively investigate the mental health of children as they enter first grade and progress through their early school years and into adolescence with a particular focus on the evolving role of such environmental influences as family structure, school atmosphere, and neighborhood on psychological well-being. Investigators were especially interested in identifying factors associated with increased risk of adolescent substance dependence and abuse and determining and designing preventive interventions for subsequent substance dependence and abuse. The original sample consisted of four cohorts of first grade African American children residing in a poor urban community on the south side of Chicago. Cohorts were enrolled annually 1964 through 1967. The third cohort of first graders (1966-1967) also included interviews with the participants' mothers; they were followed-up in 1976 when the children were teenagers. Clinical measures (e.g.,"How I feel" schedule; Mother Symptom Inventory) assessed the child's and mother's reported functioning and experience of symptoms. Educational measures were included to evaluate child's aptitude, readiness for learning, and classroom performance. Family structure and organization were assessed through an interview with mother. At the adolescent follow-up, a questionnaire assessed frequency of drug use, reports of family practices and values regarding affection and rules, self-reported delinquency, sexual behavior and attitudes. The Murray Archive holds additional analogue materials for this study (a core sample of 1242 children, with additional data on approximately 200 more participants; also data for 1388 mothers at Time I [1966] and 939 mothers at Time III [1976]). If you would like to access this material, please apply to use the data. Follow-up of study participants is not possible. Use of data requires submission of a two to three page research proposal for review and approval by a screening committee.

BackgroundChronic atrophic gastritis (CAG) is a precancerous condition of the gastric mucosa which predisposes to non-cardia gastric cancer (NCGC). The risk for NCGC following diagnosis with CAG has not been described robustly in the United States.MethodsWe used a commercial claims database (Marketscan, Merative LP) covering over 150 million privately-insured Americans aged 18–64 to create a cohort of individuals diagnosed with CAG. We then followed these individuals for the development of NCGC or to the time of their last clinical encounter. Demographic and clinical characteristics were captured through administrative coding schema, and linked to metropolitan statistical area measures of socioeconomic status. Individual race and ethnicity were not available for this analysis.FindingsWe analyzed data on 107,835 individuals and recorded 355,591 person-years (p-y) of follow-up. The crude overall incidence of NCGC was 98 per 100,000 p-y. In the fully-adjusted multivariable proportional hazards model, age ≥ 50 (HR 2.20, 95% CI 1.44–3.36), anemia (HR 5.09, 95% CI 3.46–7.50), former or current smoking (HR 1.42, 95% CI 1.11–1.81) and family history (HR 1.44, 95% CI 1.05–1.99) were individual-level factors associated with increased risk.ConclusionsWe present one of the first estimates of NCGC risk following CAG diagnosis in an American population, and highlight risk factors for cancer progression. These data may help to guide future risk prevention strategies, such as endoscopic surveillance, in the United States.

We examined data from 534 African Americans and 557 Hispanic/Latinos participants from the UIC Cohort of Patients, Family and Friends and genotyped enrolled participants for the top 26 obesity-associated SNPs.