Data Resources for Behavioral and Social Research on Aging

NIA supports a variety of longitudinal studies, harmonization projects, archives, and repositories to facilitate research on aging in the behavioral and social sciences. Data from these studies are available to qualified researchers, subject only to restrictions imposed for some linked administrative data. With input from periodic reports, including those by the National Advisory Council on Aging (NACA), the National Academy of Sciences (NAS), and ad hoc expert review panels, BSR has developed a portfolio of data projects to meet evolving scientific priorities.

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In 2015-2016, a Committee on Data Infrastructure conducted an assessment of the BSR portfolio of data infrastructure investments to meet the scientific needs of the social and behavioral research community to further understanding of the aging process and aging outcomes in the coming decade. A full report is available.

The National Archive of Computerized Data on Aging (NACDA) at the Inter-University Consortium for Political and Social Research (ICPSR) offers access to a broad range of datasets relevant to gerontological research. The Gateway to Global Aging Data is a platform for population survey data on aging around the world. This site offers a digital library of survey questions, a search engine for finding comparable questions across surveys, and identically defined variables for cross-country analysis

Resources funded or co-funded by NIA

The links below include some of the major resources funded or co-funded by NIA.

Health and Retirement Study (HRS): Longitudinal panel study that surveys a representative sample of over 20,000 people in America aged 50+.

Midlife in the United States (MIDUS): National longitudinal study of health and well-being that aims to investigate the role of behavioral, psychological, and social factors in accounting for age-related variations in health and well-being in a national sample of Americans.

National Health and Aging Trends Study (NHATS): Nationally representative sample of Medicare beneficiaries aged 65+ that fosters research to guide efforts to reduce disability, maximize health and independent functioning, and enhance quality of life at older ages.

National Social Life, Health, and Aging Project (NSHAP): Longitudinal, population-based study of health and social factors to understand the well-being of older, community-dwelling Americans by examining the interactions among physical health and illness, medication use, cognitive function, emotional health, sensory function, health behaviors, social connectedness, sexuality, and relationship quality.

Panel Study of Income Dynamics: Nationally representative sample of over 18,000 individuals living in 5,000 families in the United States. PSID data are available on this website without cost to researchers and analysts.

A “family” of international studies, including the Health and Retirement Study in the United States, have worked to harmonize data to facilitate cross-national comparative research on aging.

A major new resource for the study of cognitive aging is data from the Harmonized Cognitive Aging Protocol. These data, from harmonized assessments linked to nationally or regionally representative samples of older people, greatly expand the possibilities for research on normal cognitive aging, cognitive impairment, and dementia in populations. Data for the United States (HCAP) and Mexico (MHAS) are already available for researchers; future releases will include data for England, 27 other European countries, China, India, and a rural region of South Africa.

Educational cohorts

NIA supports several population-representative, demographically diverse educational cohort studies (i.e., samples initiated when respondents were in school settings, including samples that capitalize on the clusters of respondents within schools). These studies provide a resource for scholars seeking to elucidate how education and other social factors impact health disparities and health outcomes, including Alzheimer's disease and related dementias (AD/ADRD), over the life course.

Add Health

The National Longitudinal Study of Adolescent to Adult Health (Add Health) is a longitudinal study of a nationally representative sample of over 20,000 adolescents who were in grades 7-12 during the 1994-95 school year, and have been followed for five waves to date, most recently in 2016-18 at ages 33-43. Field collection for Wave VI (when most respondents are in their 40s) is currently ongoing and includes enhanced measures relevant for mid-life health, including precursors for AD/ADRD. Over the years, Add Health has collected rich demographic, social, familial, socioeconomic, behavioral, psychosocial, cognitive, and health survey data from participants and their parents; a vast array of contextual data from participants’ schools, neighborhoods, and geographies of residence; and in-home physical and biological data from participants, including genetic markers, blood-based assays, anthropometric measures, and medications. Public data and restricted data from the project are available via ICPSR and via the CPC portal, respectively. Visit the Add Health website for more information.

EdSHARe

High School and Beyond (HSB) and the National Longitudinal Study of 1972 (NLS-72) are two nationally representative educational cohorts originally supported by the US Department of Education’s National Center for Education Statistics (NCES). Together these comprise the Educational Studies for Health Aging Research (EdSHARe). These two studies represent birth cohorts born approximately a decade apart (NLS-72—born 1954; HSB—born 1962, 1964). The two studies contain rich harmonized measures of high school educational experiences and other aspects of early life which can facilitate a variety of comparative analyses.

High School and Beyond
Beginning with approximately 25,000 interviews when respondents were high school sophomores and seniors in 1980, HSB has followed respondents through age 60 and includes a variety of measures to examine integrated processes related to AD/ADRD including cognitive function battery, AD/ADRD blood-based biomarkers, pharmacy records, and information on the oral microbiome. Visit the High School and Beyond website for more information on how to access the data.
NLS-72
NLS-72 (N=14,489) is a nationally representative and highly diverse random sample of Americans first interviewed as high school seniors in 1972. NLS-72 will re-enter the field in 2024 to collect a variety of AD/ADRD measures (cognitive function battery, AD/ADRD blood-based biomarkers, and MRIs) at age 70. Visit the NLS-72 website for more information on data access.

Wisconsin Longitudinal Study

The Wisconsin Longitudinal Study (WLS) is a long-term study of a one-third random sample of over 10,000 people who graduated from Wisconsin high schools in 1957. The panel was expanded by also interviewing siblings of graduates and, when available, the graduate’s spouse and sibling’s spouse. The WLS provides an opportunity to study the life course, intergenerational transfers and relationships, family functioning, physical and mental health and well-being, and morbidity and mortality from late adolescence through 2011. In recent years, WLS has focused on enhanced measurement of AD/ADRD measures, including diagnostic protocols and AD/ADRD biomarkers. WLS data also cover social background, youthful aspirations, schooling, military service, labor market experiences, family characteristics and events, social participation, psychological characteristics, and retirement. Visit the Wisconsin Longitudinal Study website for information on how to access data.

Project Talent

Project Talent is a nationally representative longitudinal study of more than 377,000 students from 1,353 schools across the country. The study first began in 1960 and has followed the students after their high school graduation, to better understand what experiences and influences helped prepare them for their careers and life after high school. Additional studies focusing on racial disparities, economic mobility, and twins continued until the original participants were in their 40s.&

As study participants moved into retirement, Project Talent has served as a resource for understanding the aging process. To further understand the process, NIA funded the Project Talent Aging Study, which follows 22,500 of the original Project Talent participants and now also supports multiple projects that take advantage of a registry linkage between Project Talent participants and their CMS data. Visit the Project Talent website for more information on how to access data.

National Longitudinal Study of Youth, 1979 (NLSY-79)

The National Longitudinal Study of Youth, 1979 (NLSY-79) is a national representative sample of 12,686 men and women living in the United States and born during the years 1957 through 1964. When first interviewed in 1979, respondents were ages 14 to 22. The survey aimed to collect data chronicling life changes those respondents faced such as finishing schooling, entering the labor market, serving in the military, and more. Interviews were conducted annually from 1979 to 1994 and on a biennial basis thereafter. NIA has supported the Bureau of Labor Statistics to include cognitive measures harmonized with Health and Retirement Study measures in recent waves. Visit the NLSY-79 website for more information, including on data access.

Funded projects from RFA-AG-22-025: Data enhancements and analyses to clarify the relationship between education and cognitive function (including AD/ADRD)

RFA-AG-22-025 solicited applications for research projects to add enhanced measures of educational experiences, cognitive function, or both to existing studies and/or conducts analyses that incorporate these measures to clarify the relationship between education, cognition, and risk of AD/ADRD, including the role of education in social disparities in AD/ADRD outcomes. The following active projects were supported by that RFA:

1R01AG078522-01 Genetic Differences in the Causal Effect of Education Quantity and Quality on Cognitive Functioning and Dementia Diagnosis Later in Life
1R01AG078518-01 Heterogeneous Effects of Education on Alzheimer’s Disease and Related Dementia among Demographic Groups: A Multigenerational and Multilevel Study
1R01AG078533-01 Education and Cognitive Functioning in Later Life: The Nation’s High School Class of 1972

More information

For further information on these or other resources supported by NIA/BSR, please contact the BSR Office of Data Resources and Analytics.