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http://www.utsouthwestern.edu/education/medical-school/departments/neurology/programs/alzheimers-disease-center/brain-tissue-donation-program.html

Brain tissue donation program at the UT Southwestern Memory Clinic that aims to utilize these contributions for research on Alzheimer's. Diagnosis of Alzheimer's disease or other dementias are made through autopsy, the results of which are available to family members.

Proper citation: UT Southwestern ADC Brain Tissue Donation Program (RRID:SCR_008837) Copy   

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http://iadc.iupui.edu/

The mission of the Indiana Alzheimer Disease Center is to serve as a shared research resource in order to facilitate research in Alzheimer disease and related disorders and to distinguish them from normal aging. Within this mission, one objective is to provide an environment and core resources to enhance ongoing research and foster new lines by bringing together basic and clinical scientists to study the etiology, pathogenesis, diagnosis, and treatment of Alzheimer disease and related dementias, with an emphasis on hereditary dementias. The Center is composed of 6 cores: Administrative, Clinical, Neuropathology, Data Management, Education and Information Transfer, and Imaging. The Neuropathology Core functions as brain-bank facility, which stores samples from hundreds of autopsied cases and supplies them to research investigators around the world. The focus of the IADC is on behavioral neurology, clinicopathological correlations, biochemistry, and genetics of AD, frontotemporal dementia and parkinsonism linked to chromosome 17 (FTDP-17), Gerstmann-Str��������ussler-Scheinker disease (GSS), Parkinson disease and other hereditary diseases associated with abnormal protein accumulation. The Neuropathology Core carries out state-of-the-art neuropathological examination of brain, spinal cord and other tissue samples obtained from individuals affected by neurodegenerative dementia and/or other related neurodegenerative diseases. The Core is composed of five different laboratories: histology and immunohistochemistry, electron microscopy, molecular biology, biochemistry, as well as a small-animal laboratory dedicated to the study of murine models of human diseases. In the past 15 years, we have been among the first to discover mutations in genes implicated in the etiology and pathogenesis of early-onset dementia. Specifically we have identified novel mutations in the Amyloid Precursor Protein gene (APP) and Presenilin 1 (PSEN1) that are responsible for hereditary forms of early-onset AD. We have also found several novel mutations responsible for Gerstmann-Str��������ussler-Scheinker (GSS) disease, a hereditary degenerative disease causing ataxia, parkinsonism and dementia secondary to the accumulation of mutated prion protein (PrP). We have reported mutations in the MAPT gene in FTDP-17, a tauopathy which causes personality changes, cognitive dysfunction, rigidity and dementia. Other areas of research in neurodegeneration are related to the study of genetic mutations of Neuroserpin (SCNA) and Light Ferritin Polypeptide genes.

Proper citation: Indiana Alzheimer Disease Center (RRID:SCR_012811) Copy   

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http://www.census.gov/did/www/nlms/

A database based on a random sample of the noninstitutionalized population of the United States, developed for the purpose of studying the effects of demographic and socio-economic characteristics on differentials in mortality rates. It consists of data from 26 U.S. Current Population Surveys (CPS) cohorts, annual Social and Economic Supplements, and the 1980 Census cohort, combined with death certificate information to identify mortality status and cause of death covering the time interval, 1979 to 1998. The Current Population Surveys are March Supplements selected from the time period from March 1973 to March 1998. The NLMS routinely links geographical and demographic information from Census Bureau surveys and censuses to the NLMS database, and other available sources upon request. The Census Bureau and CMS have approved the linkage protocol and data acquisition is currently underway. The plan for the NLMS is to link information on mortality to the NLMS every two years from 1998 through 2006 with research on the resulting database to continue, at least, through 2009. The NLMS will continue to incorporate data from the yearly Annual Social and Economic Supplement into the study as the data become available. Based on the expected size of the Annual Social and Economic Supplements to be conducted, the expected number of deaths to be added to the NLMS through the updating process will increase the mortality content of the study to nearly 500,000 cases out of a total number of approximately 3.3 million records. This effort would also include expanding the NLMS population base by incorporating new March Supplement Current Population Survey data into the study as they become available. Linkages to the SEER and CMS datasets are also available. Data Availability: Due to the confidential nature of the data used in the NLMS, the public use dataset consists of a reduced number of CPS cohorts with a fixed follow-up period of five years. NIA does not make the data available directly. Research access to the entire NLMS database can be obtained through the NIA program contact listed. Interested investigators should email the NIA contact and send in a one page prospectus of the proposed project. NIA will approve projects based on their relevance to NIA/BSR''s areas of emphasis. Approved projects are then assigned to NLMS statisticians at the Census Bureau who work directly with the researcher to interface with the database. A modified version of the public use data files is available also through the Census restricted Data Centers. However, since the database is quite complex, many investigators have found that the most efficient way to access it is through the Census programmers. * Dates of Study: 1973-2009 * Study Features: Longitudinal * Sample Size: ~3.3 Million Link: *ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/00134

Proper citation: National Longitudinal Mortality Study (RRID:SCR_008946) Copy   

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http://www.icpsr.umich.edu/icpsrweb/NACDA/studies/04076/version/1

A dataset of a survey of intergenerational relations among 2,044 adult members of some 300 three- (and later four-) generation California families: grandparents (then in their sixties), middle-aged parents (then in their early forties), grandchildren (then aged 16 to 26), and later the great-grandchildren as they turn age 16, and further surveys in 1985, 1988, 1991, 1994, 1997 and 2001. This first fully-elaborated generation-sequential design makes it possible to compare sets of parents and adult-children at the same age across different historical periods and addresses the following objectives: # To track life-course trajectories of family intergenerational solidarity and conflict over three decades of adulthood, and across successive generations of family members; # To identify how intergenerational solidarity, and conflict influence the well-being of family members throughout the adult life course and across successive generations; # To chart the effects of socio-historical change on families, intergenerational relationships, and individual life-course development during the past three decades; # To examine women''s roles and relationships in multigenerational families over 30 years of rapid change in the social trajectories of women''s lives. These data can extend understanding of the complex interplay among macro-social change, family functioning, and individual well-being over the adult life-course and across successive generations. Data Availability: Data from 1971-1997 are available through ICPSR as Study number 4076. * Dates of Study: 1971-2001 * Study Features: Longitudinal * Sample Size: ** 345 Three-generational families ** 2,044 Adults (1971 baseline) Link: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/04076

Proper citation: Longitudinal Study of Generations (RRID:SCR_008939) Copy   

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http://www.rand.org/labor/FLS/MFLS.html

A follow-up of the 1976-1977 MFLS-1 dataset covering the respondents'' and spouses'' marriage, fertility, employment, education and migration histories as well as extensive information on the household economy. The MFLS-2 contains a supplementary sample of persons age 50 or older. The data permit analysis of intergenerational transfers to the elderly and their covariates; the living arrangements of the elderly; the health of the elderly; labor supply, occupation and retirement status of the elderly; and their migration patterns. This supplement fills the gap left by many standard sources of demographic and economic information about Third World populations, such as fertility surveys and labor force surveys, which effectively exclude the elderly. Field work for MFLS-2 began in Aug. 1988 and was completed in Jan. 1989. The survey was fielded in four samples: * The Panel Sample Women who were the primary respondents to the MFLS-1, who at that time (1976) were ever-married women aged 50 or younger. There are 926 panel households in MFLS-2, a follow-up rate of 72%. * The Children Sample Children aged 18 or older in 1988 of the women interviewed as primary respondents for MFLS-1; i.e. adult children of the women eligible for the MFLS-2 Panel sample. There were interviews with one child, selected at random, inside the Panel household and two children, selected at random, living elsewhere in Peninsular Malaysia. There are 1,136 respondents in the Children sample. * The New Sample A sample of households with a woman aged 18-49 (regardless of her marital status) or an ever-married woman under age 18. There are 2,184 respondents in MFLS-2 New Sample. * The Senior Sample Selected households with a person age 50 or over. There are 1,357 respondents in the Senior Sample. Data Availability: The MFLS-2 (and MFLS-1) data files and documentation are available on-line or from NACDA at ICPSR as Study No. 9805. * Dates of Study: 1988-1989 * Study Features: International * Sample Size: Seniors (aged 50+): 1,357 Link: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/09805

Proper citation: Second Malaysian Family Life Survey (RRID:SCR_008892) Copy   

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http://www.nlsinfo.org/

A dataset that permits examination of health, economic, work, and retirement trajectories for a representative national sample of men from middle to old age. The original sample of 5,020 men, first interviewed in 1966, was re-interviewed periodically until 1983 under a contract with the US Department of Labor. The study provided a detailed longitudinal record of their labor market activity, health, financial status, family structure, and attitudes toward and experience in retirement. The NIA grant made possible a re-interview in 1990 with the surviving men and the widows (or other next-of-kin) of the decedents. The merging of the 1990 data includes death certificate information for the decedents, Blacks were over-represented in the original sample in a ratio of about three or four to one, resulting in about 500 surviving black men in the sample. Information on labor market activity, income, and assets also is available for a sample of about 1,350 widows, 90 percent of whom are between 60 and 89 years of age. This information can be linked to earlier data on the women''s health and work activity that was reported by their late husbands. Due to the original sample selection, other NLS cohorts contain wives and daughters of the older men. These other surveys also hold a wealth of detailed information on aging and retirement issues, especially on income transfers. * Dates of Study: 1966-1990 * Study Features: Longitudinal, Minority Oversamples * Sample Size: ** 1966: 5,020 men (baseline) ** 1990: 2,092 surviving men, 1,341 widows, 865 other next-of-kin Links: * BLS Website on NLS: http://www.bls.gov/nls/ * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/04675

Proper citation: National Longitudinal Survey of Older Men (RRID:SCR_008947) Copy   

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http://fcon_1000.projects.nitrc.org/indi/pro/nki.html

A phenotypically rich neuroimaging sample, consisting of data obtained from individuals between the ages of 4 and 85 years-old. All individuals included in the sample undergo semi-structured diagnostic psychiatric interviews, and complete a battery of psychiatric, cognitive and behavioral assessments in order to provide comprehensive phenotypic information for the purpose of exploring brain / behavior relationships.

Proper citation: NKI/Rockland Sample (RRID:SCR_009435) Copy   

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http://psidonline.isr.umich.edu/

Long-term longitudinal dataset with information on generational links and socioeconomic and health conditions of individuals over time. The central foci of the data are economic and demographic, with substantial detail on income sources and amounts, wealth, savings, employment, pensions, family composition changes, childbirth and marriage histories, and residential location. Over the life of the PSID, the NIA has funded supplements on wealth, health, parental health and long term care, housing, and the financial impact of illness, thus also making it possible to model retirement and residential mobility. Starting in 1999, much greater detail on specific health conditions and health care expenses is included for respondent and spouse. Other enhancements have included a question series about emotional distress (2001); the two stem questions from the Composite International Diagnostic Interview to assess symptoms of major depression (2003); a supplement on philanthropic giving and volunteering (2001-03); a question series on Internet and computer use (2003); linkage to the National Death Index with cause of death information for more than 4,000 individuals through the 1997 wave, updated for each subsequent wave; social and family history variables and GIS-linked environmental data; basic data on pension plans; event history calendar methodology to facilitate recall of employment spells (2001). The reporting unit is the family: single person living alone or sharing a household with other non-relatives; group of people related by blood, marriage, or adoption; unmarried couple living together in what appears to be a fairly permanent arrangement. Interviews were conducted annually from 1968 through 1997; biennial interviewing began in 1999. There is an oversample of Blacks (30%). Waves 1990 through 1995 included a 20% Hispanic oversample; within the Hispanic oversample, Cubans and Puerto Ricans were oversampled relative to Mexicans. All data from 1994 through 2001 are available as public release files; prior waves can be obtained in archive versions. The special files with weights for families are also available. Restricted files include the Geocode Match File with information for 1968 through 2001, the 1968-2001 Death File, and the 1991 Medicare Claims File. * Dates of Study: 1968-2003 * Study Features: Longitudinal, Minority Oversampling * Sample Size: 65,000+ Links * ICPSR Series: http://www.icpsr.umich.edu/icpsrweb/ICPSR/series/00131 * ICPSR 1968-1999: Annual Core Data: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/07439 * ICPSR 1968-1999: Supplemental Files: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/03202 * ICPSR 1989-1990: Latino Sample: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/03203

Proper citation: Panel Study of Income Dynamics (RRID:SCR_008976) Copy   

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http://nis.princeton.edu/

Public use data set on new legal immigrants to the U.S. that can address scientific and policy questions about migration behavior and the impacts of migration. A survey pilot project, the NIS-P, was carried out in 1996 to inform the fielding and design of the full NIS. Baseline interviews were ultimately conducted with 1,127 adult immigrants. Sample members were interviewed at baseline, 6 months, and 12 months, with half of the sample also interviewed at three months. The first full cohort, NIS-2003, is based on a nationally representative sample of the electronic administrative records compiled for new immigrants by the US government. NIS-2003 sampled immigrants in the period May-November 2003. The geographic sampling design takes advantage of the natural clustering of immigrants. It includes all top 85 Metropolitan Statistical Areas (MSAs) and all top 38 counties, plus a random sample of other MSAs and counties. Interviews were conducted in respondents'' preferred languages. The baseline was multi-modal: 60% of adult interviews were administered by telephone; 40% were in-person. The baseline round was in the field from June 2003 to June 2004, and includes in the Adult Sample 8,573 respondents, 4,336 spouses, and 1,072 children aged 8-12. A follow-up was planned for 2007. Several modules of the NIS were designed to replicate sections of the continuing surveys of the US population that provide a natural comparison group. Questionnaire topics include Health (self-reports of conditions, symptoms, functional status, smoking and drinking history) and use/source/costs of health care services, depression, pain; background; (2) Background: Childhood history and living conditions, education, migration history, marital history, military history, fertility history, language skills, employment history in the US and foreign countries, social networks, religion; Family: Rosters of all children; for each, demographic attributes, education, current work status, migration, marital status and children; for some, summary indicators of childhood and current health, language ability; Economic: Sources and amounts of income, including wages, pensions, and government subsidies; type, value of assets and debts, financial assistance given/received to/from respondent from/to relatives, friends, employer, type of housing and ownership of consumable durables. * Dates of Study: 2003-2007 * Study Features: Longitudinal * Sample Size: 13,981

Proper citation: New Immigrant Survey (RRID:SCR_008973) Copy   

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http://www.midus.wisc.edu/

Data set from a collaborative, interdisciplinary investigation of patterns, predictors, and consequences of midlife development in the areas of physical health, psychological well-being, and social responsibility. Respondents were asked to provide extensive information on their physical and mental health throughout their adult lives, and to assess the ways in which their lifestyles, including relationships and work-related demands, contributed to the conditions experienced. An additional series of questions focusing on childhood queried respondents regarding the presence/absence of their parents, religion, rules/punishments, love/affection, physical/verbal abuse, and the quality of their relationships with their parents and siblings. Respondents were drawn from a nationally representative random-digit-dial sample of non-institutionalized, English-speaking adults, aged 25-74, selected from working telephone banks in the coterminous United States. Those queried participated in an initial telephone interview and responded to a mail questionnaire. MIDUS 2 carried forward MIDUS 1 and enlisted a new sample of African Americans. MIDUS2 also expanded the focus by incorporating detailed neurophysiological assessments on a large subsample in three geographic regions. Data collection largely repeats T1 assessments (45 minute phone interview, 100 page self-administered questionnaire) plus additions in select areas (e.g., cognitive functioning, optimism and coping, life events, caregiving). In addition, MIDUS 2 is using diary techniques to assess daily stressors in a subsample of respondents; conducting cognitive testing through telephone interviews; collecting biological data on a subsample of respondents, including baseline biomarkers as well as laboratory challenge studies, with assessments of salivary cortisol, blood pressure, and heart rate variability; and collecting EEG measures to focus on the central circuitry of emotion, related to affect and depression. Siblings and Twins: Similar data were collected from a survey of 951 siblings of a respondent in the main survey. MIDUS also contains twins data, from a separate national survey unrelated to the main MIDUS survey. From this separate national survey, a total of 1,996 twins agreed to participate. The Twins respondents were given the same assessments as the Main and Siblings samples. Additionally, the Twins sample was asked a series of questions about their birth, shared physical characteristics, childhood and adult relationships with their twin, whether they were dressed alike as children, and whether others experienced difficulty identifying them correctly. Data and comprehensive documentation for MIDUS 1 and 2 are available via ICPSR. * Dates of Study: 1995-2008 * Study Features: Longitudinal, Minority Oversampling, Anthropometric Measures * Sample Size: ** 1995-6: 4,242 (MIDUS 1) ** 2004-6: 7,108 (MIDUS 2) Links: * ICPSR ����?? MIDUS 1: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/02760 * ICPSR ����?? MIDUS 2: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/04652

Proper citation: National Survey of Midlife Development in the United States (RRID:SCR_008972) Copy   

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http://dx.doi.org/10.3886/ICPSR06842.v1

A panel data set for use in cross-cultural analyses of aging, health, and well-being between the U.S. and Japan. The questionnaires were designed to be partially comparable to many surveys of the aged, including Americans'' Changing Lives; 1984 National Health Interview Survey Supplement on Aging; Health and Retirement Study (HRS), and Well-Being Among the Aged: Personal Control and Self-Esteem (WBA). NSJE questionnaire topics include: * Demographics (age, sex, marital status, education, employment) * Social Integration (interpersonal contacts, social supports) * Health Limitations on daily life and activities * Health Conditions * Health Status (ratings of present health) * Level of physical activity * Subjective Well-Being and Mental Health Status (life satisfaction, morale), * Psychological Indicators (life events, locus of control, self-esteem) * Financial situation (financial status) * Memory (measures of cognitive functioning) * Interviewer observations (assessments of respondents) The NSJE was based on a national sample of 2,200 noninstitutionalized elderly aged 60+ in Japan. This cohort has been interviewed once every 3 years since 1987. To ensure that the data are representative of the 60+ population, the samples in 1990 and 1996 were refreshed to add individuals aged 60-62. In 1999, a new cohort of Japanese adults aged 70+ was added to the surviving members of previous cohorts to form a database of 3,990 respondents 63+, of which some 3,000 were 70+. Currently a 6-wave longitudinal database (1987, 1990, 1993, 1996, 1999, & 2002) is in place; wave 7 began in 2006. Data Availability: Data from the first three waves of the National Survey of the Japanese Elderly are currently in the public domain and can be obtained from ICPSR. Additional data are being prepared for future public release. * Dates of Study: 1987-2006 * Study Features: Longitudinal, International * Sample Size: ** 1987: 2,200 ** 1990: 2,780 ** 1993: 2,780 ** 1996: ** 1999: 3,990 ** 2002: ** 2006: Links: * 1987 (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06842 * 1990 (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/03407 * 1993 (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/04145 * 1996 (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/26621

Proper citation: National Survey of the Japanese Elderly (RRID:SCR_008971) Copy   

•   Source: SciCrunch Registry

http://ohsu.eagle-i.net/i/0000012e-5e3a-7084-4106-535b80000000

In cooperation with the Data and Clinical Cores at the Layton Center, the Biomarkers and Genetics Core generates and maintains biomarker data for select biomarkers which have established roles in the characterization of subjects with or at risk of dementia. Biological markers of brain aging, dementia risk, and neurodegeneration have the potential to accelerate the identification of disease mechanisms and treatment strategies. Biomarkers may include genes, proteins, or other metabolites, and may be identified in DNA, cerebrospinal fluid (CSF), or plasma. Apolipoprotein E (APOE) genotype is generated for all research subjects. Sub-groups of subjects have other types of biomarker data. Many subjects have had genome-wide SNP data generated. In order to foster collaborative research as well as expand resources and expertise, samples (DNA, CSF, and plasma) and data are distributed to qualified investigators worldwide. Most of these researchers are pursuing the causes and modifiers of dementia. Data and samples are collected from well characterized research subjects including the healthy elderly and dementia patients.

Proper citation: Layton Alzheimers Disease Center Biomarkers and Genetics Core Lab (RRID:SCR_009911) Copy   

•   Source: SciCrunch Registry

http://ohsu.eagle-i.net/i/0000012e-5e56-c3be-4106-535b80000000

THIS RESOURCE IS NO LONGER IN SERVICE.Documented on December 6th,2022. The Oregon Alzheimer?s Disease Center?s (OADC) Clinical Core program, directed by Dr. Jeffrey Kaye, performs longitudinal studies of the natural history of brain aging and Alzheimer''s disease in patients and healthy control volunteers. These studies which are performed through standardized neurological, neuro-psychological, and brain-imaging assessments are carried out in the Alzheimer''s Disease and Memory Assessment Clinics as well as through community-based assessments conducted in the homes of study volunteers. The Layton Center Neuroimaging Lab conducts brain-imaging MRI brain scans to assist in diagnosis of brain disease. Typically, MRI images are taken from three different planes. These planes are known as the coronal plane, sagittal plane and the axial plane. Each series of MRI images is named after the plane from which they were obtained. The Clinical Core?s research is focused on preclinical and early Alzheimer?s disease (AD) yet is also poised to participate in other relevant new research as it arises. The OADC Clinical Core recruits, assesses and follows individuals from population groups at high risk for dementia such as: the healthy ?oldest old?, subjects with family history of AD, and subjects with Mild Cognitive Impairment (MCI). Research with underserved populations The Oregon Alzheimer?s Disease Center also maintains two Satellite programs to enhance understanding of underserved populations: The Klamath Exceptional Aging Project (KEAP) is a community-based study of brain aging being conducted in Klamath Falls. The African American Dementia and Aging Project (AADAPt) s a Portland-based cohort of 100 African American seniors.

Proper citation: Layton Alzheimers Disease Center Clinical Core (RRID:SCR_009912) Copy   

•   Source: SciCrunch Registry

http://ohsu.eagle-i.net/i/0000012e-5dd8-5be1-4106-535b80000000

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on December 5th,2022. The Education and Information Core of the Layton Aging & Alzheimer?s Disease Center develops and carries out a wide range of educational programs to: * Increase public awareness and understanding of Alzheimer''s Disease research, * Aid in the recruitment of subjects for research studies, and * Improve care and quality of life for persons with dementia and support their family caregivers. Our educational activities include: * Training for health care professionals which include seminars and lectures and we also provide ?hands-on? experiences for medical students, * Community education on Alzheimer''s disease and related dementia disorders, * Workshops on doctor ? patient communication for families and caregivers, * Collaboration with community organizations and groups to promote awareness of the disease and publicize research activities, a particular focus is underserved populations including rural communities and minority groups, * Collaboration with other organizations that serve patients and families, e.g., the Alzheimer?s Association and other state and local agencies that serve the elderly and the loved ones who care for them, and * Distribution of printed material that provides topical information on a variety of subjects related to Alzheimer?s disease and dementia and how best to provide quality of life to those with the disease. * A newsletter, Aging & Alzheimer''s Update, which is published twice per year. The Education Core administers the Oregon Income Tax Check-off Alzheimer''s Research Fund in collaboration with The Oregon Partnership for Alzheimer''s Research, a community advisory committee.

Proper citation: Layton Aging and Alzheimers Disease Center Education Core (RRID:SCR_009909) Copy   

•   Source: SciCrunch Registry

http://ki.se/en/research/the-swedish-twin-registry-1

The Swedish Registry was established in the 1960s to study how smoking affects our health. Then little was known about the dangers of smoking. There is, at present, information on approximately 85 000 twin pairs, both monozygotic and dizygotic. As described by Lichtenstein et al., 2002, Pedersen et al., 2002 and Lichtenstein et al., 2006, the Swedish Twin Registry (STR) is the largest and most comprehensive twin registry in the world. Founded in 1961, the registry covers all like-sexed twin births since 1886, and all twin births (like- and unlike-sexed) since 1906. There are currently 89,000 pairs of twins registered, of which both members of 65,000 pairs are alive, with regular updates concerning vital status, addresses, hospital discharges, tumors, and causes of death, through subscriptions to national registries. Furthermore, there is extensive epidemiological data (exposures, symptoms and disease through questionnaires or interviews) on all pairs born 1986 or earlier, for most individuals involving 30 year baseline to follow-up information. Furthermore, data from the cohort of twins born since 1991 have been or will be contacted with a telephone interview with the parents of twins as they turn 9 (CATSS). Because the STR is an (inter)national resource, we are receptive to collaboration academic and industry-based researchers. Regardless of the type of research all potential collaborations or data access agreements must be first reviewed Steering Committee of the STR.

Proper citation: Swedish Twin Registry (RRID:SCR_008883) Copy   

•   Source: SciCrunch Registry

http://ki.se/ki/jsp/polopoly.jsp?d=29350&a=31589&l=en

THIS RESOURCE IS NO LONGER IN SERVICE, documented August 29, 2016. The aim of EXT (extinction) is to investigate the relation between specific genetic variations and cognitive control process in fear. Blood samples will be collected from about 300 healthy, young individuals (age 18-35).

Proper citation: KI Biobank - EXT (RRID:SCR_008875) Copy   

•   Source: SciCrunch Registry

http://ki.se/en/imm/sheep-the-stockholm-heart-epidemiology-program

DNA from a population-based case-control study designed to investigate causes of myocardial infarction. The study population comprised all Swedish citizens living in the county of Stockholm who were 45 to 70 years of age and free of previously clinically diagnosed MI. Sample types: * DNA Number of sample donors: 2831 (sample collection completed)

Proper citation: SHEEP - Stockholm Heart Epidemiology Program (RRID:SCR_008905) Copy   

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http://www.nltcs.aas.duke.edu/index.htm

A data set of a longitudinal survey designed to study changes in the health and functional status of older Americans (aged 65+). It also tracks health expenditures, Medicare service use, and the availability of personal, family, and community resources for caregiving. The survey began in 1982, and follow-up surveys were conducted in 1984, 1989, 1994, 1999, and 2004. The surveys are of the entire Medicare-enrolled aged population with a particular emphasis on the functionally impaired. As sample persons are followed through the Medicare record system, virtually 100% of cases can be longitudinally tracked so that declines, as well as increases, in disability may be identified as well as exact dates of death. NLTCS sample persons are followed until death and are permanently and continuously linked to the Medicare record system from which they are drawn. Linkage to the Medicare Part A and B service use records extends from 1982 to 2004, so that detailed Medicare expenditures and types of service use may be studied. Through the careful application of methods to reduce non-sampling error, the surveys provide nationally representative data on: * The prevalence and patterns of functional limitations, both physical and cognitive; * Longitudinal and cohort patterns of change in functional limitation and mortality over 22 years; * Medical conditions and recent medical problems; * Health care services used; * The kind and amount of formal and informal services received by impaired individuals and how it is paid for; * Demographic and economic characteristics like age, race, sex, marital status, education, and income and assets; * Out-of-pocket expenditures for health care services and other sources of payment; * Housing and neighborhood characteristics. In each of the six surveys, large samples (N~20,000) of the oldest-old population (i.e., those 85 and over) are obtained. The survey data (i.e., detailed community and institutional interviews. The linkage to Medicare enrollment files between 1982 and 2004 was 100%, i.e., there was complete follow-up of all cases (including survey non-respondents) for Medicare eligibility (and for most years, detailed Part A and B use), mortality, and date of death. Medicare mortality records (and dates of death) are available for 1982 to 2005. The number of deaths (i.e., about 32,000 from 1982 to 2005) is large enough that detailed mortality analyses can be done. Over the 22 years spanned by the six surveys, a total of 49,242 distinct individuals were followed from and linked to Medicare records. Data Availability: The data are available through ICPSR as Study No. 9681. The data are available only on CD-ROM and only upon completion of a signed Data Use Agreement. Continuously linked Medicare data (1982 through 2004) for the National Long Term Care Surveys are only available from CMS. * Dates of Study: 1982-2004 * Study Features: Longitudinal, Anthropometric Measures * Sample Size: ** 1982: 20,485 ** 1984: 25,401 ** 1989: 17,565 ** 1994: 19,171 ** 1999: 19,907 ** 2004: 20,474 Link: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/09681

Proper citation: National Long Term Care Survey (RRID:SCR_008943) Copy   

•   Source: SciCrunch Registry

http://www.ohsu.edu/xd/research/centers-institutes/neurology/alzheimers/research/data-tissue/biomarkers-genetics.cfm

A center that works with the Oregon Alzheimer's Disease Center's Data Core, and collects and stores tissue samples, family history and genotype data of various populations. These include samples and data from subjects from the following sources: OADC clinical studies, the Oregon Brain Aging Study, the Community Brain Donor Program, the Preventing Cognitive Decline with Alternative Therapies program (informally called the Dementia Prevention Study or DPS), the African American Dementia and Aging Project, and the Klamath Exceptional Aging Project. The collected data samples include genomic DNA, lymphoblast cell lines, genome-wide and candidate region SNP marker data, APOE, AD candidate gene markers.

Proper citation: Layton Center Biomarkers and Genetics (RRID:SCR_008824) Copy   

•   Source: SciCrunch Registry

http://www.icpsr.umich.edu/icpsrweb/NACDA/studies/09915/version/3

A data set and sister study to the Established Populations for Epidemiologic Study of the Elderly (EPESE). It complements the findings of the three other EPESE sites (East Boston, MA; New Haven, CT; and north-central North Carolina) and has common items and methods in many domains. The target population was all persons 65 years and older in two rural counties in east central Iowa: Iowa and Washington counties. In 1981 a census of older persons in the target area was conducted by the investigators, creating an ascertainment list having 99% of the persons identified in the previous year by the US Decennial Census. The baseline survey was conducted between December 1991 and August 1992. Overall, 3,673 persons, or 80% of the target population were interviewed: 65-69 (N = 986), 70-74 (N = 988), 75-79 (N = 815), 80-84 (N = 523), and 85+ (N = 361). The population is virtually entirely Caucasian. Subsequently, personal follow-up surveys were conducted 3, 6, and 10 years after the baseline survey. Telephone surveys were conducted 1, 2, 4, 5, and 7 years after the baseline survey. Data collected from respondents included information about demographics, major health conditions, health care utilization, hearing and vision, weight and height, elements of nutrition, sleep problems, depressive and anxiety symptoms, alcohol and tobacco use, cognitive performance and dementia screening, incontinence measures, life satisfaction index, social networks and support, worries, medication use, activities of daily living, dental problems, satisfaction with medical care, life events, brief economic status, automobile driving habits, multiple measures of physical and disability status, and blood pressure. At follow-up #6, there were a series of physical function performance tests, the so-called NIA-MacArthur Battery, and blood was drawn for biochemical tests and potentially other determinations. In addition, some datasets were linked to the EPESE dataset under appropriate restrictions, including Iowa state driving records and clinical diagnoses and medical care utilization from the Centers for Medicare and Medicaid Services. Data Availability: The dataset has been shared with several investigative teams under special arrangement with the Principal Investigator. Early surveys are available from ICPSR. A small storage of blood is available for exploratory analyses. * Dates of Study: 1991-2001 * Study Features: Longitudinal, Anthropometric Measures, Biomarkers * Sample Size: 1991-2: 3,673 (baseline) Link: EPESE 1981-93 ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/09915

Proper citation: Iowa 65+ Rural Health Study (RRID:SCR_008937) Copy   

•   Source: SciCrunch Registry