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http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06718

Data set on the prevalence of self-care behaviors by non-institutionalized older adults. Personal interviews were conducted with 3,485 individuals 65 years of age and older, with oversampling of the oldest old. Questions were asked about the type and extent of self-care behaviors for activities of daily living, management of chronic conditions (through self-care activities, equipment use, and environmental modifications), medical self-care for acute conditions, health promotion/disease preventions, social support, health service utilization, and socio-demographic/economic status. A follow-up study by telephone was conducted in 1994 to continue examination of subjects. Many of the same questions from the baseline were asked, along with questions regarding change in health status since baseline and nursing home visits. For subjects who had been institutionalized since baseline (Part 2), information was gathered (by proxy) regarding demographic status, living arrangements prior to institutionalization, and reasons for institutionalization. For subjects who had died since baseline (Part 3), information was again gathered through interviews with proxies. Questions covered nursing home admissions and date and place of death. In both waves, a proxy was substituted if the subject was hospitalized (or institutionalized since baseline), too ill, cognitively not able to respond, or deceased. Survey data were linked to Medicare/Medicaid health utilization records. The baseline data are archived at NACDA as ICPSR Study No. 6718, and the followup data are archived as ICPSR Study No. 2592 and linkable to the baseline data. * Dates of Study: 1990-1994 * Study Features: Longitudinal * Sample Size: ** 1990-1: 3,485 (Baseline) ** 1994: 2,601 (Followup) Links: * 1990-1991 Baseline ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06718 * 1994 Follow-up ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/02592

Proper citation: National Survey of Self-Care and Aging (RRID:SCR_013456) Copy   

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http://www.ssc.wisc.edu/nsfh/home.htm

A national sample survey dataset covering a wide variety of issues on American family life beginning in 1987-88 and at two subsequent timepoints1992-93 and 2001-03. Topics covered included detailed household composition, family background, adult family transitions, couple interactions, parent-child interactions, education and work, health, economic and psychological well-being, and family attitudes. The first wave interviewed 13,017 respondents, including a main cross-section sample of 9,643 persons aged 19 and over plus an oversample of minorities and households containing single-parent families, step-families, recently married couples, and cohabiting couples. In each household, a randomly selected adult was interviewed. In addition, a shorter, self-administered questionnaire was filled out by the spouse or cohabiting partner of the primary respondent. Interviews averaged about 100 minutes, although interview length varied considerably with the complexity of the respondent''s family history. In 1992-94, an in-person interview was conducted of all surviving members of the original sample, the current spouse or cohabiting partner, and with the baseline spouse or partner in cases where the relationship had ended. Telephone interviews were conducted with focal children who were aged 5-12 and 13-18 at baseline. Short proxy interviews were conducted with a surviving spouse or other relative in cases where the original respondent died or was too ill to interview. A telephone interview was conducted with one randomly selected parent of the main respondent. In 2001-03, telephone interviews were conducted with: Surviving members of the original respondents who had a focal child age 5 or over at baseline; the baseline spouse/partner of these original respondents, whether or not the couple was still together; the focal children who were in the household and aged 5-18 at baselinemost of whom were interviewed at wave 2; and all other original respondents age 45 or older in 2000, and their baseline spouse/partner. Oversamples: Blacks, 9.2%; Mexican-Americans, 2.4%; Puerto Ricans, 0.7% * Dates of Study: 1987-2003 * Study Features: Longitudinal, Minority Oversampling * Sample Size (original respondents): ** Wave I (1987-88): 13,017 ** Wave II (1992-93): 10,007 ** Wave III (2001-03): 8,990 Links: * Wave I (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06041 * Wave II (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06906 * Wave III (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/00171

Proper citation: National Survey of Families and Households (RRID:SCR_013388) Copy   

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http://www.diw.de/en/soep

A wide-ranging representative longitudinal study of private households that permits researchers to track yearly changes in the health and economic well-being of older people relative to younger people in Germany from 1984 to the present. Every year, there were nearly 11,000 households, and more than 20,000 persons sampled by the fieldwork organization TNS Infratest Sozialforschung. The data provide information on all household members, consisting of Germans living in the Old and New German States, Foreigners, and recent Immigrants to Germany. The Panel was started in 1984. Some of the many topics include household composition, occupational biographies, employment, earnings, health and satisfaction indicators. In addition to standard demographic information, the GSOEP questionnaire also contains objective measuresuse of time, use of earnings, income, benefit payments, health, etc. and subjective measures - level of satisfaction with various aspects of life, hopes and fears, political involvement, etc. of the German population. The first wave, collected in 1984 in the western states of Germany, contains 5,921 households in two randomly sampled sub-groups: 1) German Sub-Sample: people in private households where the head of household was not of Turkish, Greek, Yugoslavian, Spanish, or Italian nationality; 2) Foreign Sub-Sample: people in private households where the head of household was of Turkish, Greek, Yugoslavian, Spanish, or Italian nationality. In each year since 1984, the GSOEP has attempted to re-interview original sample members unless they leave the country. A major expansion of the GSOEP was necessitated by German reunification. In June 1990, the GSOEP fielded a first wave of the eastern states of Germany. This sub-sample includes individuals in private households where the head of household was a citizen of the German Democratic Republic. The first wave contains 2,179 households. In 1994 and 1995, the GSOEP added a sample of immigrants to the western states of Germany from 522 households who arrived after 1984, which in 2006 included 360 households and 684 respondents. In 1998 a new refreshment sample of 1,067 households was selected from the population of private households. In 2000 a sample was drawn using essentially similar selection rules as the original German sub-sample and the 1998 refreshment sample with some modifications. The 2000 sample includes 6,052 households covering 10,890 individuals. Finally, in 2002, an overrepresentation of high-income households was added with 2,671 respondents from 1,224 households, of which 1,801 individuals (689 households) were still included in the year 2006. Data Availability: The data are available to researchers in Germany and abroad in SPSS, SAS, TDA, STATA, and ASCII format for immediate use. Extensive documentation in English and German is available online. The SOEP data are available in German and English, alone or in combination with data from other international panel surveys (e.g., the Cross-National Equivalent Files which contain panel data from Canada, Germany, and the United States). The public use file of the SOEP with anonymous microdata is provided free of charge (plus shipping costs) to universities and research centers. The individual SOEP datasets cannot be downloaded from the DIW Web site due to data protection regulations. Use of the data is subject to special regulations, and data privacy laws necessitate the signing of a data transfer contract with the DIW. The English Language Public Use Version of the GSOEP is distributed and administered by the Department of Policy Analysis and Management, Cornell University. The data are available on CD-ROM from Cornell for a fee. Full instructions for accessing GSOEP data may be accessed on the project website, http://www.human.cornell.edu/che/PAM/Research/Centers-Programs/German-Panel/cnef.cfm * Dates of Study: 1984-present * Study Features: Longitudinal, International * Sample Size: ** 1984: 12,290 (GSOEP West) ** 1990: 4,453 (GSOEP East) ** 2000: 20,000+ Links: * Cornell Project Website: http://www.human.cornell.edu/che/PAM/Research/Centers-Programs/German-Panel/cnef.cfm * GSOEP ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/00131

Proper citation: German Socio-Economic Panel (RRID:SCR_013140) Copy   

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http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/04219

A collection of data of an epidemiological study of chronic disease in the oldest old based on information collected from Kaiser Permanente facilities in Northern California (KPNC). The initial sample was drawn from the Kaiser''s active membership lists for the years 1971 and 1980. The sample was restricted to members that had a Multiphasic Health Checkup examination (MHC) within 7 years of the baseline date. The sample was stratified to attain equal numbers of observations (1,000 in each) in three sex-age cells for each cohort: 65-69, 70-79, and 80+. Each cohort was followed for 9 years through existing medical records and computerized hospitalization tapes. Mortality data was collected by matching the sampled data with state Vital Statistics data for an additional 3 years for a total follow-up time of 12 years. Part 1 of the data collections consists of Master Records, which includes information from the morbidity review, in which over 35 chronic conditions or diagnoses were abstracted from the member charts, as well as detailed diagnostic criteria for the major conditions. A prevalence review was done, which included the 4 years prior to the baseline date for these same conditions. Recurrent disease is included for the following conditions: cancers, myocardial infarction, and various forms of strokes. A detailed account of outpatient health services use, and data from the multiphasic health checkup, which was administered to each participant during the nine yearly follow-ups, are also included in the Master Records file. The labs and procedures included: chemistry, hematology, urinalysis, bacteriology, chest x-ray, GI x-ray, ultrasound, CT/MRI, mammogram, resting ECG, treadmill ECG, echocardiograms, nuclear scans, outpatient breast biopsy, cystoscopy, and cataract surgery. Inpatient utilization includes all hospitalizations, procedures done during a hospital stay, length of stay, admitting/discharge diagnosis. Part 2, Hospitalization, contains records of causes and dates of hospitalizations and discharges and nursing home admissions. There is also a section on incomplete reviews and the reasons for them. Demographic information and some lifestyle information from the multiphasic health checkup (e.g., smoking, alcohol, and Body Mass Index) are also in this file. Data Availability: These datasets have been documented extensively and are available from the ICPSR (Study No. 4219). * Dates of Study: 1971-1992 * Study Features: Longitudinal, Anthropometric Measures * Sample Size: ** 1971 cohort: 2,877 (baseline) ** 1980 cohort: 3,113 (baseline) ** 1971 & 1980: 5,990 ** Hospitalization: 14,730 Links: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/04219 * HSRR: http://wwwcf.nlm.nih.gov/hsrr_search/view_hsrr_record_table.cfm?TITLE_ID=381&PROGRAM_CAME=toc_with_source2.cfm

Proper citation: Epidemiology of Chronic Disease in the Oldest Old (RRID:SCR_013466) Copy   

•   Source: SciCrunch Registry

http://aging.brain-map.org/

The Aging, Dementia and Traumatic Brain Injury Study is a detailed neuropathologic, molecular and transcriptomic characterization of brains of control and TBI exposure cases from a unique aged population-based cohort from the Adult Changes in Thought (ACT) study. The study contains six data sets: histology and immunohistochemistry, in situ hybridization, rna-seq, protein quantification by luminex, isoprostane quantification, and specimen metadata.

Proper citation: Aging Dementia and Traumatic Brain Injury Study (RRID:SCR_014554) Copy   

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https://scicrunch.org/scicrunch/data/source/nlx_154697-13/search?q=*

A virtual database created by the Neuroscience Information Framework currently indexing Scientific Blog and News resources such as: Nature Network Blogs, Wired Science Blogs, The Guardian: Science, It Takes 30, Scientific American Cross-Check, Scientific American Bering in Mind, Research Blogging, CENtral Science, ScienceBlogs: Medicine and Health, American Guest Blog, Scientific American Observations, LabSpaces, RetractionWatch.com, Wired Science, Genomes Unzipped, PLoS Blogs, Daring Nucleic Adventures - genegeek, H2SO4Hurts - Brian Krueger PhD, and Sciblogs.

Proper citation: Integrated Blogs (RRID:SCR_005386) Copy   

•   Source: SciCrunch Registry

http://scienceblogs.com/neurotopia/

A neuro blog that is no longer updated but has interesting archives. Categories: * Academia * Activism * Addiction * Aging/Gerontology * Basic Science Posts * Behavioral Neuro * Blog Carnivals * CNS Diseases and Disorders * Cognition * Creationism / Intelligent Design * Evil Journal Club * Evolution * Friday Weird Science * Health Care / Medicine * Menopause * Natural Sciences * Neuroanatomy * Neuroscience * Philosophy * Physiology / Pharmacology * Politics/Policy * Primatology * Religion * Rocket Surgery * Samsara * SchadenFriday * Synaptic Misfires

Proper citation: ScienceBlogs Neurotopia (RRID:SCR_008934) Copy   

•   Source: SciCrunch Registry

http://blog.clearscience.io/

THIS RESOURCE IS NO LONGER IN SERVICE, documented July 27, 2015. Infrastructure for more effective scientific communication by leveraging the open APIs of GitHub, Amazon Web Services, and Synapse, clearScience demonstrates how scientists can easily transition from exploring dataexecuting scienceand providing the scientific community all the resources and artifacts to recreate analyses. By capturing the complete lifecycle of a project, reproducibility becomes a byproduct rather than a burden of publication. Further, we provide for forking an analysis, allowing anyone to explore and elaborate on "published" work. If the goal of biomedical research is to deliver results that will ultimately alleviate suffering and minimize harm to patients, being able to transparently share, reproduce, and build off of one another's work is critical to scientific progress. clearScience represents one compelling model for facilitating this progress.

Proper citation: clearScience (RRID:SCR_008958) Copy   

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http://www.nia.nih.gov/research/dab/aged-rodent-tissue-bank-handbook

A repository of tissue collected from the NIA Aged Rodent Colonies under contractual arrangement with BioReliance. The NIA colonies are barrier maintained and Specific Pathogen Free. Tissues are fresh frozen and stored at -80 degrees Celsius. Tissue from the NIA Aged Rodent Tissue Bank is available to investigators at academic and nonprofit research institutions who are engaged in funded research on aging. The project name and source of funding must accompany all orders. It may not be possible to ship tissue to foreign countries that have restrictions on the import of animal tissues or products. Please Note: Incomplete order forms will be returned. We can only offer following week delivery for those orders for which completed order forms are received by the deadline of Tuesday noon, Eastern time. Starting April 1, 2012, a copy (.pdf) of the purchase order must be emailed along with the order form.

Proper citation: Aged Rodent Tissue Bank (RRID:SCR_010607) Copy   

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http://www.nia.nih.gov/research/blog

Blog intended for grantees of the National Institute on Aging (NIA) at the NIH, as well as applicants for funding, those with an application in mind, application reviewers, and students pursuing careers in research on aging and Alzheimer's disease.

Proper citation: Inside NIA: A Blog for Researchers (RRID:SCR_012812) Copy   

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https://www.jax.org/news-and-insights/2004/june/app-mouse-models-for-alzheimers-disease-research

An information resource about several models for mice to develop Alzheimer's-related characteristics as they age.

Proper citation: Mouse Models For Alzheimer's Disease Research (RRID:SCR_000708) Copy   

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https://ncats.nih.gov/grdr/rdhub

A database of biospecimens collected, stored, and distributed by biorepositories in the United States and around the globe. Its goals are: To help and assist interested parties and investigators search, locate, and identify desired biospecimens needed for their research; to facilitate collaboration and sharing of material and data among investigators across the globe; to accelerate research to facilitate the discovery of new treatments, therapeutics and eventually cures for rare diseases as well as common diseases; to identify, locate and increase the awareness of existing biorepositories across the globe; and to link the RD-HUB with the Global Rare Diseases Patient Registry and Data Repository (GRDR).

Proper citation: Biospecimens/Biorepositories: Rare Disease-HUB (RD-HUB) (RRID:SCR_004327) Copy   

•   Source: SciCrunch Registry

http://ki-su-arc.se/dementia-in-swedish-twins-harmony/

A twin study characterizing the importance of genetic factors for dementia and using discordant twin pairs to study other putative risk factors which control for genetic propensity to develop the disease. Molecular genetic studies have identified a number of mutations and other markers associated with early age of onset Alzheimer''''s disease. However, most cases of late age of onset dementia are considered sporadic, that is, without a clear genetic basis. Twin studies provide a unique opportunity to characterize the importance of genetic factors for dementia. Discordant twin pairs additionally provide the opportunity to study other putative risk factors which controlling for genetic propensity to develop the disease. In the first wave of the Study of Dementia in Swedish Twins, all SATSA twins born before 1935 have been screened for dementia symptoms. Over 190 suspects have been identified. This pilot study has been expanded to the entire registry in the study known as HARMONY. All twins aged 65 and older were invited to participate in a computer assisted telephone screening interview. A total of 13,519 individuals completed the interview (response rate = 75.9%). Dementia screening was based on the TELE, which includes the 10-item MSQ, other cognitive items (counting backwards, recalling three words, and similarities), and questions about health and daily functioning; or on Blessed scores obtained from a proxy interview. Among those screened, 1565 were positive for suspicion of dementia and were referred for complete clinical evaluation by a physician and a nurse. Once the preliminary in-person evaluation suggested that the suspected case was demented, the twin partner was also invited for an identical clinical work-up. Response rate for clinical evaluations is 71.4%. Approximately half of those visited for evaluation have been diagnosed as demented according to DSM-IV criteria, of which two-thirds have Alzheimer''''s disease. An extensive assessment of probable risk exposure is also included. Longitudinal follow-up is yet another feature of the study. Association studies with candidate genes are also being performed. Types of samples * DNA Number of sample donors * 1154 (sample collection completed)

Proper citation: KI Biobank - HARMONY (RRID:SCR_008884) Copy   

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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   

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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   

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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   

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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   

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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

http://www.seattle.eric.research.va.gov/VETR/biospecimen_repository.asp

The Vietnam Era Twin (VET) Registry maintains a repository of biological specimens obtained from Registry members. The VET Registry Biospecimen Repository includes DNA, plasma, and serum samples obtained from selected VET Registry members. As the VET Registry is a national resource for studies investigating genetic and non-genetic influences on health and disease in middle age men, this enhances the value of the information collected from VET Registry members to the research community. The VET Registry has developed a general system of protocols for the collection and storage of biological specimens that assures confidentiality for all participants. The biological specimens currently in use are stored at the R&D Core Laboratory at the VA Puget Sound Health Care System (VAPSHCS) in Seattle, WA. The R&D Core Laboratory performs DNA extraction procedures and separates out DNA, plasma, and serum for testing and storage. It is important to note that Core Laboratory staff has absolutely no phenotypic (non-genetic) information about VET Registry members, as the lab is completely blinded to the identity, disease characteristics, and any other research data collected from VET Registry members. The Massachusetts Veterans Epidemiology Research and Information Center (MAVERIC) Core Laboratory is located at the VA Boston Health Care System in Boston, MA, and serves as the long-term storage site for the VET Registry Biospecimen Repository. Before a VET Registry member decides whether to participate in the Biospecimen Repository, the procedures, confidentiality safeguards, and potential risks are explained in great detail. To be able to accommodate the wishes of members, a so-called layered consent process is used which allows members to choose from several options with regard to how their biological specimen will be used in current or future research studies. Such options may include: 1) not having their samples used for any testing beyond the immediate goals of the study; 2) allowing for future testing of their samples restricted to the study for which they provided the sample; or 3) allowing unrestricted future research use of their samples. Members are informed that any future use of their samples would have to be approved by the VET Registry, in addition to an independent ethics committee that protects the rights and welfare of research subjects, this board is more commonly known as an Institutional Review Board or IRB. Confidentiality safeguards include assigning code numbers, as opposed to name or other personal information, on all biological specimens. Zygosity Testing The accuracy of DNA testing makes it the best method for determining zygosity, identical (monozygotic) versus fraternal (non-identical or dizygotic), in VET Registry twin members. The use of DNA for zygosity testing is only performed when both members of a twin pair agree to the testing. Other Genetic Testing for specific genes will not necessarily involve providing the participants with test results.

Proper citation: Vietnam Era Twin Registry Biospecimen Repository (RRID:SCR_008808) Copy   

•   Source: SciCrunch Registry