National Social Life, Health, and Aging Project (NSHAP): Round 3 and COVID-19 Study, [United States], 2015-2016, 2020-2021 (ICPSR 36873)
The National Social Life, Health and Aging Project (NSHAP) is a population-based study of health and social factors on a national scale, aiming to understand the well-being of older, community-dwelling Americans by examining the interactions among physical health, illness, medication use, cognitive function, emotional health, sensory function, health behaviors, and social connectedness. It is designed to provide health providers, policy makers, and individuals with useful information and insights into these factors, particularly on social and intimate relationships.
The National Opinion Research Center (NORC), along with Principal Investigators at the University of Chicago, conducted more than 3,000 interviews during 2005 and 2006 with a nationally representative sample of adults aged 57 to 85. Face-to-face interviews and biomeasure collection took place in respondents' homes. Round 3 was conducted from September 2015 through November 2016, where 2,409 surviving Round 2 respondents were re-interviewed, and a New Cohort consisting of adults born between 1948 and 1965 together with their spouses or co-resident partners was added. All together, 4,777 respondents were interviewed in Round 3. The following files constitute Round 3: Core Data, Social Networks Data, Disposition of Returning Respondent Partner Data, and Proxy Data.
Included in the Core files (Datasets 1 and 2) are demographic characteristics, such as gender, age, education, race, and ethnicity. Other topics covered respondents' social networks, social and cultural activity, physical and mental health including cognition, well-being, illness, history of sexual and intimate partnerships and patient-physician communication, in addition to bereavement items. In addition data on a panel of biomeasures including, weight, waist circumference, height, and blood pressure was collected. The Social Networks (Datasets 3 and 4) files detail respondents' current relationship status with each person identified on the network roster. The Disposition of Returning Respondent Partner (Datasets 5 and 6) files detail information derived from Section 6A items regarding the partner from Rounds 1 and 2 within the questionnaire. This provides a complete history for respondent partners across both rounds. The Proxy (Datasets 7 and 8) files contain final health data for Round 1 and Round 2 respondents who could not participate in NSHAP due to disability or death.
The COVID-19 sub-study, administered to NSHAP R3 respondents in the Fall of 2020, was a brief self-report questionnaire that probed how the coronavirus pandemic changed older adults' lives. The COVID-19 sub-study questionnaire was limited to assessing specific domains in which respondents may have been affected by the coronavirus pandemic, including: (1) COVID experiences, (2) health and health care, (3) job and finances, (4) social support, (5) marital status and relationship quality, (6) social activity and engagement, (7) living arrangements, (8) household composition and size, (9) mental health, (10) elder mistreatment, (11) health behaviors, and (12) positive impacts of the coronavirus pandemic. Questions about engagement in racial justice issues since the death of George Floyd in police custody were also added to facilitate analysis of the independent and compounding effects of both the COVID-19 pandemic and reckoning with longstanding racial injustice in America.
Standardization of Uveitis Nomenclature ("SUN"), Global, 2004-2021 (ICPSR 38665)
The uveitides are a collection of >30 diseases characterized by intraocular inflammation. Collectively, they are the 5th or 6th leading cause of blindness in the United States, and the cost of treating them has been estimated be comparable to the cost of treating diabetic retinopathy. These diseases may be due to an intraocular or systemic infection, associated with a systemic rheumatic or other inflammatory disease or eye-limited and immune-mediated. They often are grouped by the primary site of inflammation as anterior, intermediate, posterior, or panuveitides, with the primary site of clinically detected inflammation in the anterior chamber, vitreous, retina and/or choroid, or entire eye, respectively. Clinical and translational research in the field of Uveitis has been hampered by the lack of gold standards for diagnosis and a lack of consistency in the diagnosis of these diseases. Agreement among uveitis experts on diagnosis has been modest at best with some pairs of experts having agreement no better than chance alone. Research in other branches of medicine has been greatly facilitated by the development of classification criteria. Classification criteria are a type of diagnostic criteria for research purposes. Classification criteria differ from clinical diagnostic criteria in that, if a trade-off is needed, classification criteria emphasize specificity, i.e. the classification of a group of patients definitely thought to have the disease. The Standardization of Uveitis Nomenclature (SUN) Working Group is an international group of 99 investigators from 64 centers in 22 countries, with expertise in uveitis, informatics, consensus techniques, database management, ophthalmic image interpretation, and machine learning.
The SUN Working Group's project "Developing Classification Criteria for the Uveitides" goal was to develop classification criteria for 25 of the most common uveitides. The project proceeded in 4 phases: 1) informatics, 2) case collection, 3) case selection, and 4) machine learning.
The informatics phase resulted in a standardized language to describe the uveitides and a successful mapping of terms and phrases to individual diseases. The informatics phase led to the creation of a menu-driven, hierarchical, data collection tool for the case collection phase. The case collection phase consisted of the SUN Working Group entering retrospective and de-identified data on 5766 cases (total) into a preliminary database. The goal of case collection was 100-250 cases of each of the 25 diseases. Because of the lack of gold standards for diagnosis and the modest agreement among experts on diagnosis, collected cases were reviewed, and only cases with a supermajority (>75%) agreement that they were the disease were selected for the final database. Case selection consisted of committees of 9 uveitis experts reviewing the cases and voting on whether or not they were the disease. This process used formal consensus techniques, including nominal group techniques. Committees were geographically and school-of-thought dispersed. Cases achieving a supermajority agreement that they represented the disease were included in the final database. Cases with a supermajority agreement that they were not the disease were excluded, and cases without a supermajority agreement were tabled. Only 1% of cases were tabled. The final database consisted of 4046 cases (70% of those collected). The consensus diagnosis was used as the accepted diagnosis in the machine learning phase.
Following case selection, the final database was subjected to machine learning as to features that distinguished the diseases. For machine learning the case data were split into a training set and a validation set. Cases were analyzed within anatomic class, with cases from those diseases with protean presentations used in more than one class. Multiple different machine learning approaches were used, including classification and regression trees, random forests, support vector machines and multinomial logistic regression, all of which tended to have a high degree of agreement on the distinguishing features and relatively similar accuracies. The method chosen for reporting was multinomial logistic regression. Boruta analyses were used to determine a parsimonious set of criteria, and the Quine-McCluskey algorithm to create a logical set of Boolean expressions that correctly classified the diseases. Because different tests or clinical features (e.g. hilar adenopathy in patients with sarcoid can be seen on chest radiography or on chest computed tomography) might be able to indicate the disease, feature engineering was used during machine learning. The set of Boolean expressions from the machine learning were then translated into English phrases ("final rules") for clinical use. As a back check on the translation, a random set of 10% of cases was subjected to classification by an observer masked as to the consensus diagnosis. These performance of these criteria (>90% accuracy within class for machine learning on the validation set and >95% accuracy of the "final rules" by the masked observer) suggest that they can be used in clinical and translational research.
Following the machine learning phase, a meeting of the SUN Working Group was held in December 2019 to review the work and the proposed criteria. The result of this meeting was an approval of the criteria. Twenty-six manuscripts were prepared, one dealing with the methods used, and 25 disease-specific manuscripts with the criteria for each disease. The individual diseases addressed in this project included: cytomegalovirus anterior uveitis, Fuchs uveitis syndrome, herpes simplex anterior uveitis, juvenile idiopathic arthritis-associated anterior uveitis, spondyloarthritis/HLA-B27-associated anterior uveitis, tubulointerstitial nephritis with uveitis, varicella zoster anterior uveitis, pars planitis, intermediate uveitis non-pars planitis type, multiple sclerosis-associated intermediate uveitis, acute posterior multifocal placoid pigment epitheliopathy, birdshot chorioretinitis, multiple evanescent white syndrome, multifocal choroiditis with panuveitis, punctate inner choroiditis, serpiginous choroiditis, Behçet disease uveitis, sympathetic ophthalmia, Vogt-Koyanagi-Harada disease, sarcoidosis-associated uveitis, acute retinal necrosis syndrome, cytomegalovirus retinitis, syphilitic uveitis, toxoplasmic retinitis, and tubercular uveitis. The goal is for these criteria to be used as the underpinning for future clinical and translational research in the field of Uveitis.
National Social Life, Health, and Aging Project (NSHAP): Round 2 and Partner Data Collection, [United States], 2010-2011 (ICPSR 34921)
The National Social Life, Health and Aging Project (NSHAP) is the first population-based study of health and social factors on a national scale, aiming to understand the well-being of older, community-dwelling Americans by examining the interactions among physical health, illness, medication use, cognitive function, emotional health, sensory function, health behaviors, and social connectedness. It is designed to provide health providers, policy makers, and individuals with useful information and insights into these factors, particularly on social and intimate relationships.
The National Opinion Research Center (NORC), along with Principal Investigators at the University of Chicago, conducted more than 3,000 interviews during 2005 and 2006 with a nationally representative sample of adults aged 57 to 85. Face-to-face interviews and biomeasure collection took place in respondents' homes. Round 2 interviews were conducted from August 2010 through May 2011, during which Round 1 Respondents were re-interviewed. An attempt was also made to interview individuals who were sampled in Round 1 but declined to participate. In addition, spouses or co-resident partners were also interviewed using the same instruments as the main respondents. This process resulted in 3,377 total respondents. The following files constitute Round 2: Core Data, Disposition of Round 1 Partner Data, Social Networks Data, Social Networks Update Data, Partner History Data, Partner History Update Data, Medications Data, Proxy Data, and Sleep Statistics Data.
Included in the Core files (Datasets 1 and 2) are demographic characteristics, such as gender, age, education, race, and ethnicity. Other topics covered respondents' social networks, social and cultural activity, physical and mental health including cognition, well-being, illness, history of sexual and intimate partnerships, and patient-physician communication, in addition to bereavement items. Data were also collected from respondents on the following items and modules: social activity items, physical contact module, sexual interest module, get up and go assessment of physical function, and a panel of biomeasures, including weight, waist circumference, height, blood pressure, smell, saliva collection, and taste.
The Disposition of Round 1 Partner files (Datasets 3 and 4) detail information derived from Section 6A items regarding the partner from Round 1 within the questionnaire. This provides a complete history for respondent partners across both rounds.
The Social Networks files (Datasets 5 and 6) contain one record for each person identified on the network roster. Respondents who refused to participate in the roster or who did not identify anyone are not represented in this file.
The Social Networks Update files (Datasets 7 and 8) detail respondents' current relationship status with each person identified on the network roster.
The Partner History file (Dataset 9) contains one record for each marriage, cohabitation, or romantic relationship identified in Section 6A of the questionnaire, including a current partner in Round 2 but excluding the partner from Round 1.
The Partner History Update file (Dataset 10) details respondents' current sexual partner information, as well as marital and cohabiting status.
The Medications Data file (Dataset 11) contains records for items listed in the medications log.
The Proxy Data files (Datasets 12 and 13) contain information from proxy interviews administered for Round 1 Respondents who were either deceased or whose health was too poor to participate in Round 2.
The Sleep Statistics Data files (Dataset 14 and 15) provide information on actigraphy sleep variables.
NACDA also maintains a Colectica portal with the NSHAP Core data across rounds, which allows users to interact with variables across rounds and create customized subsets. Registration is required.
National Social Life, Health, and Aging Project (NSHAP): Round 1, [United States], 2005-2006 (ICPSR 20541)
The National Social Life, Health and Aging Project (NSHAP) is the first population-based study of health and social factors on a national scale, aiming to understand the well-being of older, community-dwelling Americans by examining the interactions among physical health, illness, medication use, cognitive function, emotional health, sensory function, health behaviors, and social connectedness. It is designed to provide health providers, policy makers, and individuals with useful information and insights into these factors, particularly on social and intimate relationships. The National Opinion Research Center (NORC), along with Principal Investigators at the University of Chicago, conducted more than 3,000 interviews during 2005 and 2006 with a nationally representative sample of adults aged 57 to 85. Face-to-face interviews and biomeasure collection took place in respondents' homes. The following files constitute Round 1: Core Data, Marital/Cohabiting History Data, Social Networks Data, Medications Data, and Sexual Partners Data.
Included in the Core file (Datasets 1 and 2) are demographic characteristics, such as gender, age, education, race, and ethnicity. Other topics covered respondents' social networks, social and cultural activity, physical and mental health including cognition, well-being, illness, medications and alternative therapies, history of sexual and intimate partnerships and patient-physician communication, in addition to bereavement items. In addition data was collected from respondents on the following items and modules: social activity items, physical contact module, sexual interest module, get up and go assessment of physical function and a panel of biomeasures including, weight, waist circumference, height, blood pressure, smell, saliva collection, taste, and a self-administered vaginal swab for female respondents. The Core file also contains a count of the total number of drugs taken, and a variable for each observed therapeutic category, indicating whether the respondent reported taking one or more medications in that category. These variables are derived from the information in the medications file, and thus are guaranteed to be consistent with it. The Marital/Cohabiting History file (Dataset 3) contains one record for each marriage or cohabitation identified in Section 3A of the questionnaire. The Social Networks file (Datasets 4 and 5) contains one record for each person identified on the network roster. Respondents who refused to participate in the roster or who did not identify anyone are not represented in this file. The Medications file (Dataset 6) contains one record for each item listed in the medications log (including alternative medicines and nutritional products). Respondents who did not report taking any medications or who refused to participate in this module are not represented in this file. Lastly, the Sexual Partners file (Dataset 7) contains one record for each sexual partner identified in Section 3A of the questionnaire.
NACDA also maintains a Colectica portal with the NSHAP Core data across rounds, which allows users to interact with variables across rounds and create customized subsets. Registration is required.
Sacramento Area Latino Study on Aging (SALSA Study), 1996-2008: Neuroclinical Exam Data (ICPSR 29322)
The Sacramento Area Latino Study on Aging (SALSA Study) project tracked the incidence of physical and cognitive impairment as well as dementia and cardiovascular diseases in elderly Latinos in the Sacramento, California, region. The SALSA project aimed to assess cognitive, physical, and social functions, which include the ability to follow instructions, to perform certain movements, and to interact with others. The study explored the effects that cultural, nutritional, social, and cardiovascular risk factors have on overall health and dementia, and examined the association between diabetes and functional status. This study contains the neuroclinical exam data from the SALSA project. Demographic information includes age given at follow-up visits, country of birth, language, religion, marital status, educational level, occupation, household income, and size of household.
National Health and Nutrition Examination Survey (NHANES), 2003-2004 (ICPSR 25503)
The National Health and Nutrition Examination Surveys (NHANES) is a program of studies designed to assess the health and nutritional status of adults and children in the United States. The NHANES combines personal interviews and physical examinations, which focus on different population groups or health topics. These surveys have been conducted by the National Center for Health Statistics (NCHS) on a periodic basis from 1971 to 1994. In 1999 the NHANES became a continuous program with a changing focus on a variety of health and nutrition measurements which were designed to meet current and emerging concerns. The surveys examine a nationally representative sample of approximately 5,000 persons each year. These persons are located in counties across the United States, 15 of which are visited each year.
For NHANES 2003-2004, there were 12,761 persons selected for the sample, 10,122 of those were interviewed (79.3 percent) and 9,643 (75.6 percent) were examined in the mobile examination centers (MEC). Many of the NHANES 2003-2004 questions were also asked in NHANES II 1976-1980, Hispanic HANES 1982-1984, NHANES III 1988-1994, and NHANES 1999-2002. New questions were added to the survey based on recommendations from survey collaborators, NCHS staff, and other interagency work groups. As in past health examination surveys, data were collected on the prevalence of chronic conditions in the population. Estimates for previously undiagnosed conditions, as well as those known to and reported by survey respondents, are produced through the survey. Risk factors, those aspects of a person's lifestyle, constitution, heredity, or environment that may increase the chances of developing a certain disease or condition, were examined. Data on smoking, alcohol consumption, sexual practices, drug use, physical fitness and activity, weight, and dietary intake were collected. Information on certain aspects of reproductive health, such as use of oral contraceptives and breastfeeding practices, were also collected. The diseases, medical conditions, and health indicators that were studied include: anemia, cardiovascular disease, diabetes and lower extremity disease, environmental exposures, equilibrium, hearing loss, infectious diseases and immunization, kidney disease, mental health and cognitive functioning, nutrition, obesity, oral health, osteoporosis, physical fitness and physical functioning, reproductive history and sexual behavior, respiratory disease (asthma, chronic bronchitis, emphysema), sexually transmitted diseases, skin diseases, and vision. The sample for the survey was selected to represent the United States population of all ages. Special emphasis in the 2003-2004 NHANES was on adolescent health and the health of older Americans. To produce reliable statistics for these groups, adolescents aged 15-19 years and persons aged 60 years and older were over-sampled for the survey. African Americans and Mexican Americans were also over-sampled to enable accurate estimates for these groups. Several important areas in adolescent health, including nutrition and fitness and other aspects of growth and development, were addressed. Since the United States has experienced dramatic growth in the number of older people during the twentieth century, the aging population has major implications for health care needs, public policy, and research priorities. NCHS is working with public health agencies to increase the knowledge of the health status of older Americans. NHANES has a primary role in this endeavor. In the examination, all participants visit the physician who takes their pulse or blood pressure. Dietary interviews and body measurements are included for everyone. All but the very young have a blood sample taken and see the dentist. Depending upon the age of the participant, the rest of the examination includes tests and procedures to assess the various aspects of health listed above. Usually, the older the individual, the more extensive the examination. Some persons who are unable or unwilling to come to the examination center may be given a less extensive examination in their homes.
Demographic data file variables are grouped into three broad categories: (1) Status Variables: provide core information on the survey participant. Examples of the core variables include interview status, examination status, and sequence number. (Sequence number is a unique ID assigned to each sample person and is required to match the information on this demographic file to the rest of the NHANES 2003-2004 data). (2) Recoded Demographic Variables: these variables include age (age in months for persons through age 19 years, 11 months; age in years for 1- to 84-year-olds, and a top-coded age group of 85 years of age and older), gender, a race/ethnicity variable, current or highest grade of education completed, (less than high school, high school, and more than high school education), country of birth (United States, Mexico, or other foreign born), Poverty Income Ratio (PIR), income, and a pregnancy status variable (adjudicated from various pregnancy related variables). Some of the groupings were made due to limited sample sizes for the two-year data set. (3) Interview and Examination Sample Weight Variables: sample weights are available for analyzing NHANES 2003-2004 data. For a complete listing of survey contents for all years of the NHANES see the document -- Survey Content -- NHANES 1999-2010.
Aging, Spatial Disparity, and the Sound-Induced Flash Illusion: 2015 [Riverside, California, United States] (ICPSR 100078)
Swedish Adoption/Twin Study on Aging (SATSA), 1984, 1987, 1990, 1993, 2004, 2007, and 2010 (ICPSR 3843)
Workload Capacity Across the Visual Field in Young and Older Adults (ICPSR 36054)
Sacramento Area Latino Study on Aging (SALSA Study), 1996-2008: Demographic Data (ICPSR 34483)
This study contains demographic variables for the the Sacramento Area Latino Study on Aging (SALSA) Series and can be used with ICPSR studies 22760, 29321, 29322, 29323. Demographic variables include gender, primary language, country of origin, state of birth, cause of death, 2000 census tract codes, birth date, date of death, and age given at follow-up visits.
About SALSA: The Sacramento Area Latino Study on Aging (SALSA Study) project tracked the incidence of physical and cognitive impairment as well as dementia and cardiovascular diseases in elderly Latinos in the Sacramento, California, region. The SALSA project aimed to assess cognitive, physical, and social functions, which include the ability to follow instructions, to perform certain movements, and to interact with others. The study explored the effects that cultural, nutritional, social, and cardiovascular risk factors have on overall health and dementia, and examined the association between diabetes and functional status.
National Health and Nutrition Examination Survey (NHANES), 1999-2000 (ICPSR 25501)
National Health and Nutrition Examination Survey (NHANES), 2001-2002 (ICPSR 25502)
National Health and Nutrition Examination Survey (NHANES), 2005-2006 (ICPSR 25504)
New York City Health and Nutrition Examination Survey (NYC HANES), 2004 (ICPSR 31421)
Sacramento Area Latino Study on Aging (SALSA Study), 1996-2008 (ICPSR 22760)
The Sacramento Area Latino Study on Aging (SALSA Study) project tracked the incidence of physical and cognitive impairment as well as dementia and cardiovascular diseases in elderly Latinos in the Sacramento, California, region. The SALSA project aimed to assess cognitive, physical and social functions, which include the ability to follow instructions, to perform certain movements, and to interact with others. The study explored the effects that cultural, nutritional, social and cardiovascular risk factors have on overall health and dementia, and examined the association between diabetes and functional status. Demographic information includes age given at follow-up visits, country of birth, language, religion, marital status, educational level, occupation, household income, and size of household.