Data Resource Tool
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The EdDem Network’s data resource tool collates information about population-based datasets with measures on early educational environments and experiences, AD biomarkers and genetic risk factors, and later life cognition and dementia.
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| Dataset | Study Design | Participants | Data Access | Main Site | Download Data | Technical Documentation | Sample Sizes | Years Available | Description | Owner | Dementia Diagnosis or Symptoms | Cognitive Assessments | Other Cognitive Measures | Educational Attainment or Achievement | Self-reported School Experiences, Attitudes, and Aspirations | School Characteristics (Administrative Data) | Other Eduation Measures | ADRD-Related Biomarkers | Clinical Assessments | Neuroimaging | Health Behaviors | Genetic Data | Early Life Factors | Midlife Factors | ||||||||||
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| Health and Retirement Study (HRS) | Longitudinal panel study | Nationally-representative sample of American adults over age 50 | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 7,027 to 22,032 individuals per wave | 1992; 1994; 1996; 1998; 2000; 2002; 2004; 2006; 2008; 2010; 2012; 2014; 2016; 2018; 2020; 2022 | The University of Michigan Health and Retirement Study (HRS) is a longitudinal panel study that surveys a representative sample of approximately 20,000 people in America, supported by the National Institute on Aging (NIA U01AG009740) and the Social Security Administration. Through its unique and in-depth interviews, the HRS provides an invaluable and growing body of multidisciplinary data that researchers can use to address important questions about the challenges and opportunities of aging. | University of Michigan - Survey Research Center | 2001-2004 (Wave A), 2002-2005 (Wave B), 2006-2008 (Wave C), 2008-2009 (Wave D): Dementia diagnoses, summary scores, neurological, and neuropsychological exams (ADAMS Questionnaire) | Yes | All years: Cognition for subject and proxy: word recall, count backward, subtraction of numbers, speed clicking then typing, Wechsler Adult Intelligence Scale, recalling the date, TICS, use of numbers in everyday life, Retrieval Fluency Test, Number Series Test of Quantitative Reasoning, Verbal Analogies, memory; Only 2016: Harmonized Cognitive Assessment: executive function, language and fluency, visuospatial score, orientation score, Jorm IQCode score, Blessed score, TICS, MMS, CERAD Word List; MMSE 3 Word Recognition; Logical Memory; Brave Man; CERAD Construtional praxis, MMSE Copy Polygons, Raven's Progressive Matrices, Number Series, Symbol Digit Modalities, MMSE backward spelling, backward counting, letter cancellation, TICS | Yes | Highest degree earned; Certificates or licenses earned | Yes | Issues in elementary or primary school; Extracurricular and sports activities; Perceived academic achievement relative to classmates; | Yes | School type (public/private); School race/ethnicity composition; Type of college attended; Major/field of study in college | Yes | Reading disability in elementary school; Employment history | A1C, HDL, Total Cholesterol, Cystatinn C, CRP (2006; 2008; 2010; 2012; 2014; 2016) | Yes | Blood pressure, hearing test, breathing, hand strength, balance, walking speed, height/weight/waist, saliva, health conditions, vision, pain, diabetes (All years except 2002 and 2020) | Yes | No | Preventative behavior and exercise, smoking/alcohol, depression (CESD), health care utilization, health care costs, functional limitations, ADL/IADL, substance abuse treatment, Helpers, expectations of work and life currently and as subject ages (all years) | Yes | Polygenic score data for African and European Ancestry (2006-2012) | Yes | Nativity, citizenship, family structure, parents' education work/history, transfers, housing, income, employment history/status, marital status/history, religion (all years) | |||
| Midlife in the United States (MIDUS) | Longitudinal cohort study | Nationally-representative sample of American adults aged 25-74 | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 7,108 individuals (Baseline sample) | 1995/1996; 2004-2006; 2011-2014; 2013-2014 | The first national survey of Midlife Development in the U.S. (MIDUS) was conducted in 1995/96 by the MacArthur Foundation Research Network on Successful Midlife Development. The study was conceived by a multidisciplinary team of scholars from fields of psychology, sociology, epidemiology, demography, anthropology, medicine, and health care policy. Their collective aim was 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. In addition to a national probability sample (N = 3,487), the study included over-samples in select metropolitan areas (N = 757), a sample of siblings (N = 950) of the main respondents, and a national sample of twin pairs (N=1,914). | MIDUS 1: MacArthur Foundation Research Network on Successful Midlife Development; Follow-ups: University of Wisconsin - Madison, Institute on Aging | No | Only 2004-2006, 2011-2014, and 2013-2014: Digits backward, category fluency, stop and go switch task, number series, backward counting, short-delay word list recall. | Yes | Highest level of school or college completed (1996-1996) | Yes | Self-reported racial discriminatory experience of being discouraged by a teacher or advisor from seeking higher education | Yes | No | Employment history (1996-1996) | No | Cortisol (salivary and urine); Epinephrine; Norepinephrine; Dopamine; Creatinine; Cholesterol panel (total, HDL, LDL) and Triglycerides; Hormone makers (DHEA and DHEA-S); CRP(C-Reactive Protein), ICAM (Intracellular Adhesion Molecule), IL6 (InterLeukin 6), sIL6r (soluble IL-6 receptor), Fibrinogen, ESelectin, IL-6, IL-8, IL-10, TNF-alpha (Immunoelectrochemiluminescent); BSAP (Bone Specific Alkaline Phosphatase), P1NP (aminoterminal propeptide type 1 procallagen), NTx (n-teleopeptide type 1 collagen); all trans-beta-carotene, 13-cis-beta-carotene, alpha-carotene, beta-cryptoxanthin, lutein, zeaxanthin, lycopene, retinol, alpha-tocopherol, gamma-tocopherol; creatinine; glucose metabolism (glycosylated hemoglobin (HA1c), glucose, insulin, and IGF-1 (Insulin-like Growth Factor-1); Vital signs; Morphology; Bone densitometry; Heart-rate variability; Blood pressure; Respiration | Yes | Facial electromyography (EMG); Electroencephalography (EEG); Structural MRI; Functional MRI; Perfusion MRI (Arterial spin labeling); Diffusion MRI | Yes | Height/weight, chronic conditions and illness: heart attack/procedure/conditions (personal, risk, family history), chest pain, blood pressure, cancer, smoking/alcohol, prescription medication, vitamins/supplements, health and daily activities, dyspnea, body indices, frequency seeing medical doctors and mental health professionals, menstrual cycles (women only); health insurance coverage; health care utilization; (MIDUS 1; follow-up in MIDUS 2 and MIDUS 3); Midus Project 2 and refresher sample: self-reported sleep assessments. | Yes | Conserved Transcriptional Response to Adversity (CTRA; RNA Expression Values); PRS (Polygenic Risk Score) and Imputed SNP (Single Nucleotide Polymorphism); methylation age scores | Yes | Living arrangements/homelessness, parent education/employment during childhood, welfare status during childhood, parents' nativity and language use, sexuality, ethnic origins, U.S. citizenship, abuse (emotional, physical, sexual) in childhood; religiosity (Wave 1; most measures followed up in Wave 2 and 3) | |||||
| Education Studies for Healthy Aging Research (EdSHARe): High School and Beyond (HSB) | Longitudinal cohort study | Nationally-representative sample of Americans who graduated high school in 1980 and 1982; Oversampled public schools with high percentages of Hispanic students, Catholic schools with high percentages of minority students, alternative public schools, and private schools with high-achieving students | Must request a restricted-use data license | Link | Link | Link | N = 28,240 individuals (Baseline sample) | 1980; 1982; 1984; 1986; 1992; 2014; 2021 (forthcoming) | Investigation of the intersection of the socioeconomic, institutional, and biological pathways through which education and early life conditions impact later-life health and cognition. Consists of HSB & NLS-72: One of the major goals of the NLS Program is to make the data sufficiently comparable to allow cross-cohort comparisons between studies (NLS:72 vs. HS&B vs. NELS:88 vs. ELS:2002), as well as comparative analyses of data across waves of the same study. Nevertheless, data users should be aware of some variations in sample design, questionnaire and test content, and data collection methods that could impact the drawing of valid comparisons. | National Center for Education Statistics | No | In adolescence: Reading, mathematics, vocabulary tests (1980 all; 1982 sophomores only); writing, science, civics tests (1980 HS seniors only); memory, comparisons, spatial reasoning tests (1980 HS seniors only); self-esteem/locus of control (1980 all; 1982 HS sophomores only); Mid-life follow up: immediate and delayed recall (CERAD word list), semantic fluency, phonemic fluency, working memory (digit span, forward and backgward), memory and learning (verbal and visual paired associates) | Yes | Self-reported memory difficulties and perceptions of memory in relation to others respondent's age | Secondary curriculum and courses & secondary school grades and achievements (1980 all; 1982 HS sophomores only); Post-secondary enrollment, major, courses (1982 HS seniors only; 1984 all; 1986 all; 1992 all; 2014-2015 all); Educational attainment (all years); Post-secondary plans (1980 all, 1982 all, 1984 all); Postsecondary transcripts (1993) | Yes | Educational plans, expectations for graduation, and aspirations (1980, 1982, 1984, 1992); significant others' educational expectations (1980; 1982); friend's educational attributes (1980; 1982); self-reported prevalence of general disclipinary matters at school, self-reported school rules, participation in extra-curricular activities, perceptions of different types of students (e.g., students who get good grades), knowledge of how to apply for jobs, set appointments, etc.; perceptual ratings of school quality and fairness; perceptions of parents' expectations for education and work, perceptions of how financial constraints influence post-secondary decisions; self-reported participation in and scholarships for athletics in high school or college | Yes | From teachers/administrators: influence of teachers on school policy, control in the classroom, perceptions of support for teachers from administrators, frequency met with parents or contacted by parents, frequency of class interruptions, perceptions of what teaching/school goals are most important, perceptions of average academic ability of students and how many students are above-average, class size, participation in faculty and school activities, collaborations with other teachers, teaching observations, perceptions of administrators and the school learning and working environment, hours per week assigned to teach and actually spent teaching, grading policies, recognition of student achievements, demographic and educational background and teaching experience, requirements for graduation, frequency of report cards and evaluations, goals in admitting students to the school, hiring practices and effort in recruiting and retaining quality teachers, teacher salary increases, school improvement projects; from guidance counselors: ranked goals/emphasis of guidance programs, breakdown of time spent in providing guidance services (class schedules, postsecondary education, career planning, job placement, attendance/discipline/etc), perceived metrics of the success of the guidance program, computerized information systems, availability of guidance courses, training and programs to students, availability of guidance information in any language other than English, guidance counselor demographics and education/experience, recognition of student achievements, presence of businesses and establishments around the school, prevalence of any city riots since 1964 and distance of those riots from the school, prevalence of students taking standatrdized achievement or aptitude tests | Yes | School absence frequency, comfortability in English class, whether someone read to respondent as a child and frequency, self-reported race/ethnicity composition of respondent's school, availability of financial assistance for post-secondary education, participation in career/vocational progrms | Markers of neuropathology (Ab40, Ab42, tau, NfL, p-tau 181, and GFAp from blood) (home visit 2021 follow-up) | Yes | No | No | Health status, morbidity, disabilities (learning, visual handicap, hard of hearing, deafness, speech disability, orthopedic handicap, other) and functioning, height/weight (1980 all, 1982 HS sophomores only, 1986 all; 2014-2015 all); health risk behaviors (1982 HS seniors only; 1986 all); Mortality/cause of death (2014-2015 all); self-esteem, depression, romantic relationships in high school and expectations for family in the future; Mid-life follow up: testing for disease/illness, cancer, diabetes, hypertension, stroke, heart disease, kidney disease, periodontal or gum disease, mental health conditions, use of prescription drugs, opioids, cigarette/alcohol use, loneliness, | Yes | APOE e4 and GWAS (from saliva or blood); oral microbiome collection and sequencing (home visit 2021 follow-up) | Yes | Family socioeconomic background and housing, employment status and history, financial assistance from parents, (1980 & 1982 all); Demographics, nativity, language usage/proficiency, religious background and involvement (1980 & 1982 all) | ||||
| Education Studies for Healthy Aging Research (EdSHARe): National Longitudinal Study of the High School Class of 1972 (NLS-72) | Longitudinal cohort study | Nationally-representative sample of Americans who graduated high school in 1972; Oversampled schools in low-income areas and schools with a high proportion of minority group enrollment | Must request a restricted-use data license | Link | Link | Link | N = 16,683 individuals (Baseline sample) | 1972; 1974; 1976; 1979; 1986; 1984; 2025 (forthcoming) | Investigation of the intersection of the socioeconomic, institutional, and biological pathways through which education and early life conditions impact later-life health and cognition. Consists of HSB & NLS-72: One of the major goals of the NLS Program is to make the data sufficiently comparable to allow cross-cohort comparisons between studies (NLS:72 vs. HS&B vs. NELS:88 vs. ELS:2002), as well as comparative analyses of data across waves of the same study. Nevertheless, data users should be aware of some variations in sample design, questionnaire and test content, and data collection methods that could impact the drawing of valid comparisons. | National Center for Education Statistics | No | Vocabulary, picture number, reading, letter groups, mathematics, and mosaic comparisons tests (1972): Further cognitive test battery to be available in 2025 follow-up | Yes | Science knowledge (mid-life follow up) | School characteristics and grade performance from student questionnaire, data on high school curriculum, credit hours in maor courses, and grade point averages for each student from school administrators; Highest level of education and all earned degrees, schools attended, grades received, credits earned/courses taken, financial assistance, fields of study, any applications for postsecondary or graduate education, financial assistance to attend post-secondary school | Yes | From student questionnaire: public/private school, work status during school, performance, satisfaction; future plans (work, education, other training, and/or military); other aspirations, attitudes, and opinions related to academic challenges, perceptions of what interferes with education and the state/quality of the school, participation in vocational and other education programs, participation in athletics and other extra-curricular activities, access to and helpfulness of teachers and school guidance counselors, plans to take advantage of funding/scholarship opportunities, expectations of ability to complete college | Yes | From school administrators: program and student enrollment, attendance records, racial/ethnic composition of school, dropout rates by sex, number of handicapped and disadvantaged students, and percentage of recent graduates in college; | Yes | From school counselors: background of counselors, experience with diverse ethnic groups, sources of support for postsecondary education recommended to/used by students; job placement methods used, number of students assigned for counseling and number counseled per week; time spent in counseling per week; time spent with students and time spent in other counseling activities | Biomarker collection to be made available in 2025 follow-up: bloodbased biomarker data (e.g., Ab40, Ab42, total tau, NfL, p-tau 181, GFAp, DNA methylation) | Yes | No | No | Handicaps or physical conditions that limit work ability, self-esteem | Yes | Biomarker collection to be made available in 2025 follow-up: Genomic data | Yes | Age, sex, race/ethnicity, living and financial arrangements, SES of family (composite scale as a sum of standardized scales of father's education, mother's education, 1972 family income, father's occupation, and household items) and community SES, language use, length of residence in community, family religious background, religious background, and nationality/ethnic background | ||||
| Wisconsin Longitudinal Study (WLS) | Longitudinal cohort study | Representative of Americans who graduated from Wisconsin high schools in 1957 | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 10,317 individuals (Baseline sample) | Original cohort: 1957; 1964; 1975; 1992; 2003; 2011; Siblings: 1977; 1993; 2004; 2011; 2020 | The Wisconsin Longitudinal Study (WLS) is a long-term study of a random sample of 10,317 men and women who graduated from Wisconsin high schools in 1957. 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. WLS data also cover social background, youthful aspirations, schooling, military service, labor market experiences, family characteristics and events, social participation, psychological characteristics and retirement. | University of Wisconsin–Madison | Telephone Interview for Cognitive Status (TICS-m) assessed risk for dementia (2019); (Only if determined to be at-risk for dementia) Comprehensive assessment by a health professional, Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), Clinical Dementia Rating scale, clinical dementia diagnosis (2019-current) | Yes | WAIS-R Abstract Reasoining; HenmonNelson IQ scores; E-Prime ACASI (single word reading, word recognition, picture naming, category verification); Cookie Theft task; Digit ordering; Letter/Category frequency; Similarities task; Number series task; Linguistic functoining; Word recall | Yes | Complete Educational Attainment History (1957-2010); Class rank; High school coursework | Yes | Aspirations, aspirations of friends (1957), employment aspirations (1957-1992); High school activities | Yes | Elementary through high school resources; School attractiveness, school activities; High school percentile rank; Class size; Public or private education | Yes | Classes in high school, perception of parents and teachers | No | Gut microbiome (limited sample of N=~500 collected in 2014 and 2015) | Yes | No | General health, Chronic conditions (1992-2010), Health Utilities Index (2004-2010), Health insurance (1992-2010), Medical use/costs (1992-2010), Smoking, Drinking (1992-2010), Obesity (1957, 1992-2010), Retrospective childhood health (2004), Medicare Records/Tumor Registry; Health Literacy; Physical Health: grip strength, timed gait test, chair rise, peak flow measure, anthropometrics, vision, medications (2010) | Yes | GWAS/MTAG-based polygenic scores (incl. educational attainment, cognitive performance, math ability, and highest-level math class taken); SNPs (including APOE) | Yes | Parent's occupation, income, and education | ||||
| National Social Life, Health & Aging Project (NSHAP) | Longitudinal panel study | Nationally-representative sample of Americans aged 57-85; Oversampled older men, Blacks, and Hispanics | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 3,005 to 4,777 individuals per wave | 2005-2006; 2010-2011; 2015-2016; 2020-2021 (COVID Study); 2021-2023; 2024-Present | NSHAP is a U.S. national, longitudinal, population-based collection of respondent health and social factors with public and restricted use versions of the data files. NSHAP is funded by NIA and conducted by NORC and Principal Investigators at the University of Chicago. The public use files are available for direct download from the study pages (visit series page link below). | NORC at the University of Chicago | Diagnosis of dementia, MCI, or Alzheimer's disease | Yes | SPMSQ (memory); Montreal Cognitive Assessment (MoCA) (problem solving and memory; incl. score and response time data); Chicago Cognitive Function Measure (CCFM) | Yes | Highest degree or certification earned; College attended (yes/no) | Yes | No | No | No | Cardiovascular function (systolic and diastolic BP, heart rate); Blood spots (EBV antibodies, CRP, HbA1c, Hemoglobin) | Yes | No | Anthropometrics; Physical function and frailty; Sensory function; Accelerometry (sleep and daytime activity); Hormone concentrations (DHEA, Estradiol, Progesterone, Testosterone, Cortisol); Self-reported health and health behaviors; Surgery and procedures; Functional health (self-rated and interviewer); Pain; Medication log | Yes | DNA extraction and targeted genotyping | Yes | Neighborhood characteristics (disorder); Parents' level of education | |||||||
| Study of Latinos-Investigation of Neurocognitive Aging (SOL-INCA) | Longitudinal cohort study | Nationally-representative sample of Hispanic/Latino adults aged 18-74 living in the US; Oversampled Cuban, Puerto Rican, Dominican, Mexican, and Central/South American; Recruited through four Field Centers in Miami, San Diego, Chicago and the Bronx area of New York City | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 16,415 individuals (Baseline sample) | 2008-2011; 2014-2017 | Latinos are the largest ethnic/racial minority in the US and at increased risk for cardiovascular disease (CVD), stroke, neuro-cognitive decline and Alzheimer’s disease and related dementias (ADRD). Yet, Latino ADRD research, particularly generalizable evidence from large epidemiological studies, is disparately under-represented in current scientific literature, in part, due to extra effort (e.g.,translations) and costs required for multicultural and bilingual research (e.g., translations). The SOL-INCA is an Ancillary Study to the Hispanic Community Health Study/Study of Latinos (SOL; Visit 1 2008-2011), which is a multisite (Bronx, Chicago, Miami, San Diego), prospective cohort study (n=16,415) of diverse Latinos. Middle-aged and older diverse Latinos (45-74y; n=9,652) that under-went neurocognitive testing at Visit 1 were recruited 5-7 years later for inclusion in SOL-INCA (2015-2018; n~7000; ages 52-84y). | UNC–Chapel Hill | Diagnosis of dementia, MCI, or Alzheimer's disease | Yes | Only 2008-2011: Brief cognitive battery consisting of: (1) Six-Item Screener (SIS) (mental status), (2) Brief-Spanish English Verbal Learning Test (B-SEVLT) (verbal episodic learning and memory, (3) Word Fluency (WF), and (4) Digit Symbol Subtest (DSS) (processing speed, executive function); Only 2014-2017: Trail Making Test (TMT) (parts A and B [executive function]) and NIH Toolbox Picture Vocabulary Test (PVT) (general premorbid cognitive function), self-reported cognitive decline (Everyday Cognition-12 [eCog-12]), and instrumental activities of daily living (IADL) (for functional impairment); Cognitive battery | Yes | Highest level of education | Yes | No | No | No | Cardiovascular function (systolic and diastolic BP, heart rate); Cholesterol; GFR; Hemoglobin; WBC count; CRP; | Yes | Resting-state fMRI; Structural MRI | Yes | Anthropometrics; Alcohol and tobacco use; Participant Disability Inventory; Glucose reading; Use of healthcare services; Difficulty affording healthcare services; Disease history; Health insurance; Medication history | Yes | Over 15,000 SNPs (including APOE); Ancestry genotyping | Yes | Place of birth; Gender; Years lived in the US; Immigrant generation | ||||||
| National Longitudinal Study of Adolescent to Adult Health (AddHealth) | Longitudinal cohort study | Nationally-representative sample of Americans who were in grades 7-12 during the 1994-95 school year; has data on twin/sibling pairs | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 20,745 individuals (Baseline sample) | 1994-1995; 1996; 2001-2002; 2008; 2016-2019 | 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. 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. Ancillary studies have added even more data over the years | UNC - Chapel Hill, Carolina Population Center | Cognitive, physical, and sensory functioning and risk for Alzheimer's Disease and Related Dementias (ADRD) (2016-2019) | Yes | Vocabulary test, word recall, memory task, number sets backwards | Yes | Self-perception of intelligence | Current education level and history of attainment, any degrees or certificates; Grades in particular subject at the most recent grading period; academic status and/or performance indicators for math, science, foreign language, English, history, social sciences, physical education, and a combined overall category | Yes | Self-reported work ethic in school, perceptions of difficulty getting along with students or teachers, completing homework, paying attention in school; degree to which a student feels they belong, feel safe, and feel close to people in their school; perceptions of how teachers treat students, perceptions of prejudice amongst students, perceptions of parental expectations for educational attainment | Yes | School type for each school attended (high school, two-year college, four-year college, graduate school); grade span of schools in the In-School/Wave I survey, Title I eligibility, magnet school status, charter school status, proportion of students in each school eligible for free lunch, location of school relative to populous areas, total number of students in each AHAA public school and the student/teacher ratios in these schools for the CCD survey years 1990-1991, 1993-1994, 1994-1995, and 1999-2000, racial-ethnic composition of schools, private school type, whether private school has religious affiliation, labor force characteristics of the residential areas within school districts | Yes | Any self-reported physical, learning, or emotiona conditions which limit ability to attend school and do regular work; whether drug/alcohol use interferes with school performance, reported time at school exercising or playing sports, skipping school and school absence, experiences with repeating or skipping grades, receiving suspension or expulsion, parents' report of talking with teachers in a parent-teacher conference or informal meeting, parents' report of talking with their child about their grades/school; social network information based on the respondents' course-taking patterns | No | Cotinine and 3-hydroxycotinine assay values (963 Wave III respondents), assay results for human papillomavirus and mycoplasma genitalium (subset of Wave III respondents who provided a urine sample), Wave III urinalysis data (nitrate, specific gravity, pH level, white blood cells, protein, glucose, ketone, urobilinogen, bilirubin, microalbumin, urine creatinine, and blood values); Wave IV: Assays for C-reactive protein and Epstein-Barr virus; lipids, baroreflex sensitivity, heart rate recovery, systolic blood pressure recovery; Wave V: systolic and diastolic blood pressure, pulse rate, pulse pressure and mean arterial pressure, assay results of glucose and hemoglobin A1c (HbA1c) based on venous blood collected via phlebotomy at the Wave V home exam, lipids and hyperlipidemia, renal function (assay results for creatinine and cystatin-c are available, as well as three different estimations of the glomerular filtration rate (GFR) using either the creatinine concentration, the cystatin C concentration or both concentrations), hsCRP, hepatic injury (assay results for aspartate aminotransferase (AST) and alanine aminotransferase (ALT) are available, as well as three semi-quantitative serum index assays – lipemia, hemolysis and icterus – to evaluate the possibility of interference with the AST or ALT assays; AST/ALT ratio) | Yes | No | Height, weight, BMI and BMI classification, arm and waist circumference, vital status and causes of death; family health history, depression, self-esteem, drug/alcohol/cigarette use; medication use, high cholesterol, anxiety/panic disorder, ADD/ADHD, heart disease, Hepatitis C, HIV/AIDS, other sexually transmitted diseases, migraines, PTSD, chronic bronchitis or emphysema, cancer/leukemia, diabetes, epilepsy/seizures, high blood pressure/hypertension, spouse's general physical health, children's health, extent to which health or emotional problems limit functionality, health care coverage and usage, health and mental health treatment; social activities, social support and mentoring; reproductive health, contraception use, sexual behavior and knowledge; risk behaviors (alcoho, fighting, gambling, drugs, interpersonal violence, marijuana, risky sexual behavior, suicidality, tobacco, weapon carrying); dating, intimate partner violence, marriage, relationship quality | Yes | Add Health twin and full sibling respondents who provided saliva samples at Wave IV BMI Genetic risk score and education genetic risk score; genotype values for DAT1 (dopamine transporter), DRD4 (dopamine receptor), and SLC6A4 (serotonin transporter), MAOA_V (monoamine oxidase A-uVNTR), DRD2 (dopamine D2 receptor), and CYP2A6 (cytochrome P450 2A6) from these samples; For all Wave IV respondents who agreed to provide a saliva sample for DNA testing: DAT1 (dopamine transporter), DRD4 (dopamine receptor), MAOA (monoamine oxidase A-uVNTR), 5HTTLPR (serotonin transporter), HTTLPR La-Lg-S, triallelic activity bins for the serotonin transporter 5HTTLPR adjusted for rs25531, DRD2, s000005, s000006, DRD5, and MAOCA1. For respondents who provided archival saliva samples for genetic testing at Wave IV: polygenic scores for coronary artery disease, myocardial infarction, plasma cortisol, LDL cholesterol, HDL cholesterol, total cholesterol, triglycerides, type II diabetes (2 measures), BMI, waist circumference, waist-to-hip ratio, height, age at menarche, age at menopause, number of children, age at first birth, ever/current smoker, number of cigarettes per day, extraversion, attention deficit disorder (2 measures), bipolar disorder, major depressive disorder (2 measures), schizophrenia, mental health cross disorder, Alzheimer’s disease, and educational attainment, other various anthropomorphic, health, and behavioral outcomes; polygenic scores constructed by the SSGAC (educational attainment, cognitive performance, depression, neuroticism, and subjective well-being scores based on standard GWAS summary statistics and multilevel analysis; Additional multivariate analysis scores for highest level math taken and math ability); polygenic scores for general risk tolerance, adventurousness and risky behaviors in the driving, drinking, smoking and sexual domains for unrelated participants of European ancestry; dbGaP information | Yes | Parents' education and employment, language use/proficiency, religion, citizenship, public assistance/welfare, race, ethnicity, sexuality, gender/sex | |||
| Panel Study of Income Dynamics (PSID) | Longitudinal panel study | Nationally-representative sample of American households in 1968 and households that split off from the original household (e.g., the households of adult children whose families had been interviewed in 1968); Oversampled for low-income families, Latino households, and immigrant households | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 18,233 to 31,545 individuals per wave; N = 4,460 to 10,764 families per wave | 1968; 1969; 1970; 1971; 1972; 1973; 1974; 1975; 1976; 1977; 1978; 1979; 1980; 1981; 1982; 1983; 1984; 1985; 1986; 1987; 1988; 1989; 1990; 1991; 1992; 1993; 1994; 1995; 1996; 1997; 1998; 1999; 2001; 2003; 2005; 2007; 2009; 2011; 2013; 2015; 2017; 2019; 2021 | The Panel Study of Income Dynamics (PSID) is the longest running longitudinal household survey in the world. The study began in 1968 with a nationally representative sample of over 18,000 individuals living in 5,000 families in the United States. Information on these individuals and their descendants has been collected continuously, including data covering employment, income, wealth, expenditures, health, marriage, childbearing, child development, philanthropy, education, and numerous other topics. Over 7,600 peer-reviewed publications have been based on the PSID. | University of Michigan - Survey Research Center | Dementia screening assessment | Yes | Sentence Completion Word Test; Ammons Quick Test | Yes | Memory loss; Reading problems | Highest degree earned; High school grades; College GPA; Vocational training; Pre-school attendance; Enrollment in Head Start | Yes | Effects of Great Recession on schooling; Grade repetition; Extracurricular activities | Yes | School identifiers for PSID sample members in the Child Development Supplement, Transition into Adulthood Supplement, and core PSID are available through restricted-use data. These variables can be linked to NCES datasets, including the Common Core of Data (CCD), Private School Universe Survey (PSS), and Integrated Postsecondary Education Data System (IPEDS). Additional documentation is available in the relevant PSID and NCES linkage codebooks. | Yes | Enrollment history; Major/field of study in college; | No | Height/weight; Psychological Distress Scale; IADLS and ADLS assessment | Yes | No | Smoking; vaping; alcohol use; dietary awareness; physical activity; sexual activity; sleep | Yes | Polygenic scores for health conditions; substance use; mental health; educational attainment; and age at menarche (only collected in the 2014 Child Development Supplement) | Yes | Family structure; parent's education level; parents marital status at birth | |||
| National Longitudinal Survey of Youth 1979 (NLSY79) | Longitudinal cohort study | Nationally-representative sample of Americans who were aged 14-22 in 1979 | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 9,964 (Baseline sample) | 1979; 1980; 1981; 1982; 1983; 1984; 1985; 1986; 1987; 1988; 1989; 1990; 1991; 1992; 1993; 1994; 1996; 1998; 2000; 2002; 2004; 2006; 2008; 2010; 2012; 2014; 2016; 2018; 2020; 2022 | The NLSY79 Cohort is a longitudinal project that follows the lives of a sample of American youth born between 1957-1964. The cohort originally included 12,686 respondents ages 14-22 when first interviewed in 1979; after two subsamples were dropped, 9,964 respondents remain in the eligible samples. Data are now available from Round 1 (1979 survey year) to Round 30 (2022 survey year). | U.S. Bureau of Labor Statistics | Alzheimer's or dementia diagnosis | Yes | Math and verbal scores from the PSAT, SAT, and ACT; Armed Services Vocational Aptitude Battery (ASVAB); Armed Forces Qualifications Test scores including: Arithmetic Reasoning (AR), Mathematics Knowledge (MK), Word Knowledge (WK), Paragraph Comprehension (PC), and the combined math (AR and MK) and combined verbal (WK and PC) scale | Yes | Highest degree earned; Vocational training | Yes | Reason stopped attending school; Attitude toward aspects of high school; Expulsions and suspensions | Yes | High school type (public/private); Type of college attended; Major/field of study in college; High school curriculum; each school's total enrollment; type of grading system; number of books in the school library; vocational/technical course offerings; dropout rate; percent of economically disadvantaged students; characteristics/qualifications of the staff; percentage average daily attendance | Yes | Availability of reading materials in home at age 14; Desired level of education; Desired occupation; From the school survey completed by the school administrator: (month/year last enrolled; reason not enrolled; highest grade attended; whether the respondent had participated in remedial English, remedial mathematics, English as a second language, or bilingual education classes. From the transcript data: (for each of up to 64 courses, infromation on the grade level at which the course was taken; a code for the high school course; the final or computed grade for that course; the source of the final grade; the credits received). Also from the transcript data collection: (number of days the respondent was absent from school in each of the high school grades attended; the respondent's rank in class for the last year attended; number of students in the respondent's class for the last year attended; dates (month/year) last enrolled at this school; reason left this school). *Note that the transcript data has HIGH rates of non-response. | No | Height/weight; CES-Depression Scale; Heart problems; Cognition assessment; General Anxiety Disorder Scale | Yes | No | Physical activity; Time spent on healthcare activities; Interference of health problems for daily functioning; General health behaviors; Health insurance coverage; Drug and alcohol use | Yes | No | Nativity; Race; Ethnicity; Immigration status; Parents' employment status; Bilingualism; Parental birthplace; Religious participation | |||||
| Dunedin Multidisciplinary Health and Development Study | Longitudinal cohort study | Representative of people born in Dunedin, New Zealand, during April 1972–March 1973 who were still living in the Otago region at age 3 | Must receive sponsorship from a Lead Investigator to apply as a Associated Investigator. Before receiving data access, associated Investigators must submit a concept paper describing the purpose and design of their study. | Link | Link | Link | N = 1,037 (Baseline sample) | 1975 (age 3); 1977 (age 5); 1979 (age 7); 1981 (age 9); 1983 (age 11); 1985 (age 13); 1987 (age 15); 1990 (age 18); 1993 (age 21); 1998 (age 26); 2004 (age 32); 2010 (age 38); 2017 (age 45) | The Dunedin Multidisciplinary Health and Development Study (Dunedin Study) is a longitudinal birth cohort study that tracks the health and development of 1,037 individuals born in Dunedin, New Zealand, between April 1972 and March 1973. Beginning with assessments at age 3, participants have been repeatedly followed through childhood, adolescence, and adulthood, with data collection waves extending into midlife. The study gathers comprehensive information across physical health, mental health, cognitive function, psychosocial development, and environmental exposures. The Dunedin Study is internationally recognized for its high retention rate, breadth of multidisciplinary data, and its contributions to understanding human development, health trajectories, and the origins of disease across the life course. | University of Otago | No | WAIS-IV (Block Design, Digit Span, Matrix Reasoning, Picture Completion, Similarities, Symbol Search, Vocabulary); Balance & Grip Test; Basic Motor Ability Test; Burt Word Spelling Test; Dunedin Articulation Test (DAC); Reading; Spelling and Speech Perception Tests; Rey Auditory Verbal Leaning Test; Verbal Paired Associates | Yes | Psychometric Assessment; Family history of Dementia | Preschool attendance; Highest level of education attained | Yes | Attendance; Attitudes to preschool; Experiences and Activities; School Questionnaire; Talents & Achievements; Young Person's Opinion Questionnaire | Yes | No | Student's Perception of Abilities Scale | CRP level; Il-6 level; SuPAR level | Yes | GAITRite Cognitive Walk Assessment; Anthropometry; Accident Questionnaire; Cardiovascular Risk Assessment; Dental Health and Care Questionnaire; Health conditions (asthma; diabetes; pre-diabietes; enuresis); Dr Buckfield's Medical Notes; ENT Assessment; Eyes and Ears Examination; Glycosuria; General Parent Interview Questionnaire; Injuries Questionnaire; Medical Examination Form; General Health Interview; Medicines; Mental Health Interview; Musculoskeletal Questionnaire; Otological/Audiological Assessment; Paediatric Interview and Neurological Examination; Pain & Fatigue; Short Form Health Survey; Sleep; Sleeping problems; Temporal Summation Test; Wrinkle Assessment | Yes | Structural and functional MRI (only age 45); Pre-Eclamptic Tension (PET) imaging | Yes | Family Health History Study; Family Emotional Health History; Blood Pressure and Exercise Tolerance; Diet Questionnaire; Feeding and feeding problems; First Aid Questionnaire for Mothers; General Health Survey; Health Locus of Control Scale; Hospitalisations; Mother's Health Attitudes Questionnaire; Mother's Seat Belt Questionnaire; Physical Activity Questionnaire; Smoking Questionnaire; Mother's and father's smoking; Teeth cleaning; Use of Health Services | Yes | SNPs (including APOE ε4 allele status) | Yes | Birth outcomes (Child birth outcomes, Mother birth history); Breast feeding; Childhood Trauma; Children's Life History Backgrounds; Family Pedigree; Family Structure; Father's Socioeconomic Status; Family structure (Parents' marital status at birth, Mother's Age, Mother's Blood Group, Mother's Height, Mother's occupation and hours worked); Milestones and Vineland Social Maturity Scale | |||
| Understanding America Study (UAS) | Longitudinal panel study | Nationally representative of American adults living in households, across all states | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 12,001 to 14,443 individuals per wave (Core study) | 2014; 2016; 2018; 2020; 2022 | The Understanding America Study (UAS) is a panel of households at the University of Southern California (USC) of approximately 14,700 respondents, growing to 20,000 by end of 2025 representing the entire United States. The study is an ‘Internet Panel,’ which means that respondents answer our surveys on a computer, tablet, or smart phone, wherever they are and whenever they wish to participate. | USC Dornsife Center for Economic and Social Research | Probability for cognitive impairment (PCI) score; Self-reported diagnosis of Alzheimer's or dementia | Yes | Immediate and delayed recall; Working memory and attention test; Stop and Go Switch Task; Figure Identification Task; Woodcock-Johnson numbers task; Woodcock-Johnson picture vocabulary task; Woodcock-Johnson verbal analogies task; Perceived Cognitive Functioning | Yes | Self-reported ability to manage daily activities that require cognitive health; Learning disability in childhood | Highest level of education attained | Yes | Chronic absenteeism | Yes | Type of school attended | Yes | Student loans | No | Current health conditions; Quality of Life Including Mental and Social Health; CES-D (depression); anthropometry; Patient Health Questionnaire (PHQ4) depression and anxiety | Yes | No | Smoking; Alcohol use; Use of health services; Activities of Daily Living; Physical activity; Receipt of preventitive healthcare; Sleep | Yes | No | Family structure; Highest level of parents' education; Religious affiliation of family growing up; Financial situation growing up; Mothers' work hours growing up; Bilingualism; Health in childhood; Material hardship; Parent smoking | ||||
| National Health and Aging Trends Study (NHATS) | Longitudinal panel study | Nationally representative sample of Medicare beneficiaries ages 65 and older | Publicly available after registration; Some measures require special permission to access | Link | Link | Link | N = 3,817 to 8,597 individuals per wave | 2011; 2012; 2013; 2014; 2015; 2016; 2017; 2018; 2019; 2020; 2021 | Begun in 2011, the National Health and Aging Trends Study (NHATS) gathers information on a nationally representative sample of Medicare beneficiaries ages 65 and older. Annual, in-person interviews collect detailed information on the disablement process and its consequences. The sample is refreshed periodically so that researchers may study national-level disability trends as well as individual trajectories. A last month of life interview focuses on quality of end of life care. Periodically caregivers of NHATS respondents are interviewed in the supplemental National Study of Caregiving (NSOC). Linkages to Medicare records are also available. | Johns Hopkins University Bloomberg School of Public Health | Diagnosied with dementia or Alzheimer's by a doctor; Age at diagnosis | Yes | 10-word immediate/delayed recall; Clock Drawing Test; Numbers and Letters; Stroop assessment; Cogstate battery | Yes | Self-rated memory; Age you feel | Highest level of education attained | Yes | No | No | Hemoglobin; A1C, IL-6; CRP; CMV | Yes | Self-reported diseases & chronic conditions; Depression; Anxiety; Hearing; Vision; Speaking and being understood; Pain (limitation on activities); Balance/coordination; Waist circumfrerence; Anthropometrics; ACS Disability Questions | Yes | No | Self-rated health; Hospital stays and surgeries; Falls; Sleep quality; COVID-19 (diagnosis, symptoms, health effects, vaccination); Mobility; Use of mobility devices; Capacity for physical exercise; Medical care activities; Smoking; Grip strength; Chair stands; Balance stands; Walking assessment; Health insurance status; Sedentary Time | Yes | Polygenic scores (forthcoming) | Yes | Parents education; Geographic location in adolescence; Immigration history; Health status as a child; Family financial status growing up; Family structure; Sibling gender and age |