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http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/4050?geography=South+Carolina

The Charleston Heart Study (CHS) is a prospective cohort study of 2,283 subjects (1,394 whites, 889 blacks) in which risk factors of coronary disease have been examined for the past 43 years. The CHS began enrolling a random selection of community residents who in 1960 were 35 years of age and older ����?? including men and women, black and white. A unique feature of this cohort is the fact that 102 high socio-economic status (SES) black men were purposefully included. The primary hypothesis of the original study was to investigate racial differences in the manifestation and risk factors for coronary disease. Over the ensuing 40+ years, a variety of outcome measurements were incorporated into the re-examination of the participants, including psychosocial, behavioral, aging and functional measures. Subjects were initially interviewed and examined in 1960 and 1963. Subsequent interviews and examinations took place during the following time periods: 1974-1975, 1984-1985, 1987-1989, and 1990-1991. During the most recent questionnaire (1990-1991), the following topics were examined: general health, smoking, functional disability, physical disability, cardiovascular health, sexual dysfunction, cognitive disability, depression, coffee consumption, medication history, medical history, nutrition, and body image. In addition, serum samples and blood pressure measurements were taken, and a physical exam was performed by a physician. A search of the National Death Index was completed through the year 2000, matching individuals with date and cause of death. Vital status of the CHS study participants through 12-31-2000 is presented below. Dead * White Men 539 (82.5%) * White Women 500 (67.5%) * Black Men 281 (84.4%) * High SES Black Men 59 (57.8%) * Black Women 343 (75.6%) Data Availability: Datasets are stored in the National Archive of Computerized Data on Aging (NACDA) in the ICPSR as Study No. 4050. Data are also available from the Medical University of South Carolina Library; contact a PI, Paul J. Nietert, nieterpj (at) musc.edu for further information. * Dates of Study: 1960-2000 * Study Features: Longitudinal, Minority Oversamples, Anthropometric Measures * Sample Size: 1960: 2,283 (baseline) Link ICPSR, http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/04050

Proper citation: Charleston Heart Study (RRID:SCR_008895) Copy   

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http://www.gazel.inserm.fr/

A 20 year, 20,000 person, open longitudinal epidemiological study of a cohort town. GAZEL was not constructed to answer a specific question rather it was designed to help analyze a wide range of scientific problems and is accessible to the community of researchers specializing in epidemiology. Translation is not available for all pages. The GAZEL cohort, set up in 1989 by Inserm Unit 88 (subsequently Unit 687), in cooperation with several departments of ��lectricit�� de France-Gaz de France (EDF-GDF), was a public utility firm in France involved in production, transmission and distribution of energy. GAZEL initially included 20 624 volunteers working at EDF-GDF (15 010 men and 5614 women), aged from 35 to 50 years. In accordance with its purpose as a scientific research platform, the GAZEL cohort is permanently open to epidemiologic research teams. Today, more than 50 projects on very diversified themes have been set up in GAZEL by some 20 teams, French, belonging to different bodies, and foreign (Germany, Belgium, Canada, Great Britain, Sweden, Finland, and USA).

Proper citation: Gazel Database (RRID:SCR_008962) Copy   

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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://genomics.senescence.info/genes/

Collection of annotated and manually curated data of genes related to aging divided into genes related to longevity and/or aging in model organisms (yeast, worms, flies, mice, etc.) and aging related human genes.

Proper citation: GenAge (RRID:SCR_010223) Copy   

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http://mitointeractome.kobic.kr/

Database that gathers data on interactions in the mitochondrial proteome that has been used to construct a network for the aging process in humans and to identify interactions that influence this process, since mitochondria is a major source of cellular reactive oxygen species that accumulate during aging. It will: # aid in increasing our understanding of the molecular functions and interaction networks of mitochondrial proteins, # help in identifying new target proteins for experimental research using predicted protein-protein interaction information, and # help in identifying biomarkers for diagnosis and new molecular targets for drug development related to mitochondria. How is MitoInteractome different? * Provides protein-protein interaction information with graphical display. * Applies newly added new mitochondrial protein information by using BLAST incorporated in Mitointeractome * Shows correlation of mutation with their impact * Provides specific pathway information to aid study of their impact * Contains SNP Information

Proper citation: MitoInteractome (RRID:SCR_010225) Copy   

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http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000674.v1.p1

Human genetics data from an immense (78,000) and ethnically diverse population available for secondary analysis to qualified researchers through the database of Genotypes and Phenotypes (dbGaP). It offers the opportunity to identify potential genetic risks and influences on a broad range of health conditions, particularly those related to aging. The GERA cohort is part of the Research Program on Genes, Environment, and Health (RPGEH), which includes more than 430,000 adult members of the Kaiser Permanente Northern California system. Data from this larger cohort include electronic medical records, behavioral and demographic information from surveys, and saliva samples from 200,000 participants obtained with informed consent for genomic and other analyses. The RPGEH database was made possible largely through early support from the Robert Wood Johnson Foundation to accelerate such health research. The genetic information in the GERA cohort translates into more than 55 billion bits of genetic data. Using newly developed techniques, the researchers conducted genome-wide scans to rapidly identify single nucleotide polymorphisms (SNPs) in the genomes of the people in the GERA cohort. These data will form the basis of genome-wide association studies (GWAS) that can look at hundreds of thousands to millions of SNPs at the same time. The RPGEH then combined the genetic data with information derived from Kaiser Permanente''s comprehensive longitudinal electronic medical records, as well as extensive survey data on participants'' health habits and backgrounds, providing researchers with an unparalleled research resource. As information is added to the Kaiser-UCSF database, the dbGaP database will also be updated.

Proper citation: Resource for Genetic Epidemiology Research on Adult Health and Aging (RRID:SCR_010472) 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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http://geneticassociationdb.nih.gov/

The Genetic Association Database is an archive of human genetic association studies of complex diseases and disorders. The goal of this database is to allow the user to rapidly identify medically relevant polymorphism from the large volume of polymorphism and mutational data, in the context of standardized nomenclature. The data is from published scientific papers. Study data is recorded in the context of official human gene nomenclature with additional molecular reference numbers and links. It is gene centered. That is, each record is a record of a gene or marker. If a study investigated 6 genes for a particular disorder, there will be 6 records. Anyone may view this database and anyone may submit records. You do not have to be an author on the original study to submit a record. All submitted records will be reviewed before inclusion in the archive. Both genetic and environmental factors contribute to human diseases. Most common diseases are influenced by a large number of genetic and environmental factors, most of which individually have only a modest effect on the disease. Though genetic contributions are relatively well characterized for some monogenetic diseases, there has been no effort at curating the extensive list of environmental etiological factors. From a comprehensive search of the MeSH annotation of MEDLINE articles, they identified 3,342 environmental etiological factors associated with 3,159 diseases. They also identified 1,100 genes associated with 1,034 complex diseases from the NIH Genetic Association Database (GAD), a database of genetic association studies. 863 diseases have both genetic and environmental etiological factors available. Integrating genetic and environmental factors results in the etiome, which they define as the comprehensive compendium of disease etiology.

Proper citation: Genetic Association Database (RRID:SCR_013264) 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.se/en/meb/satsa-the-swedish-adoptiontwin-study-of-aging

Longitudinal twin study to understand individual differences in aging with corresponding data and biological samples. The twin design and the inclusion of twins reared apart makes it possible to study the importance of genetic and environmental factors that may underlie differing aging outcomes. Further, the broad spectrum of biological, psychological, and social domains assessed across the life span makes it possible to study patterns of change within and across domains and how these predict health and diseases of aging. The study is comprised of several longitudinal components including, a comprehensive questionnaire that was sent to all twins in the Swedish Twin Registry who were separated at an early age and reared apart and a control sample of twins reared together. The questionnaires include items concerning rearing, family, adult, and working environment, health status, health related behaviors (e.g. alcohol, tobacco, and dietary habits) as well as relationships, and personality measures. The questionnaires were sent again at 3 year intervals in 1987, 1990, 1993 and after a break again in 2004, 2007, and 2010. Thus far more than 2,000 twins have responded to at least one of the seven questionnaire assessments conducted between 1984 and 2010. Additionally there is information about midlife life style factors from the Swedish Twin Registry that were collected about twenty years before SATSA started. In the second component a subsample of 861 individuals have participated in at least one wave of in-person testing (IPT). The first IPT started in 1986 and since then eight IPTs have been collected and the last wave will be collected during 2012-2013. The IPT includes a health examination, structured interviews, tests of functional capacity, and memory and thinking abilities. To date, over 76% of the sample has participated in 3 or more measurement waves. At IPT9 a third component was added to SATSA, a measure of day-to-day fluctuations in memory and thinking abilities, and emotions. Information about social interactions is also collected. After the visit by the research nurses the twins fill out the day-to-day booklet during the next five days. This procedure will be repeated in IPT10. This will add information about small and short-term changes and more changes are supposed to indicate the beginning of poor health. Data from SATSA can be used to study various aspects of aging. For example, the relative importance of genetic and environmental factors for individual differences in aging especially in cognitive and physical domains has been studied. A further main focus is to study changes within and across domains and which genetic and life style factors predict these changes. Given the wide spectrum of data from measured genes to social relationships collected over more than two decades they dare to say that SATSA is a unique study, with the possibility to answer many questions within gerontology and geriatrics. Types of samples * Serum * DNA Number of sample donors: 674 (June 2010)

Proper citation: KI Biobank - SATSA (RRID:SCR_005966) Copy   

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http://www.sapaldia.net/en/

SAPALDIA (Swiss study on Air Pollution and Lung Disease in adults) is a multi-center study in eight geographic areas representing the range of environmental, meteorological and socio-demographic conditions of Switzerland, which studies the effects of air pollution on the respiratory and cardiovascular health in adults. Local centers are: Aarau, Basel, Davos, Geneva, Lugano, Montana, Payerne, and Wald. It was initiated in 1991 (SAPALDIA 1) with a follow-up assessment in 2002 (SAPALDIA 2). This study has allowed to assess 1) prevalence and development of major respiratory and allergic symptoms and diseases and the age-related decline in lung function, 2) the distribution of heart rate variability in the general population over age 50, 3) the association of these health indicators with individual long term exposure to air pollution, other toxic inhalants, life style and molecular factors. Another follow-up examination (SAPALDIA 3) started in January 2010. This study is well positioned to address crucial questions of air pollution epidemiology and important environmental health policy-related questions in the coming years. When SAPALDIA was initiated in 1991, 9''''651 subjects, aged 18 to 60 years, were recruited for a detailed computer-based interview and more than 90% of them underwent lung function and atopy testing. More than 7''''000 of the subjects had bronchial reactivity tested by a methacholine challenge. SAPALDIA shares parts of its study protocol with the European Community Respiratory Health Survey (ECRHS) with which it is linked through the study center of Basel. Since 1991 SAPALDIA has been carefully following address histories of its participants. In the 2002 follow-up, 8''''047 (83%) provided health information, 6''''528 persons underwent physical re-examination, and 6''''345 provided blood samples to establish an extensive blood, plasma, serum and DNA bank. In addition, 1''''813 subjects aged 50 or older participated in 24h-ECG Holter monitoring to provide detailed data on parameters of heart rate variability. With the inclusion of cardiovascular endpoints, SAPALDIA is one of the first studies examining effects from long-term exposure to air pollution on cardiovascular health parameters as well as mutual influence between the respiratory and the cardiovascular system. The SAPALDIA bio-bank has allowed scientific publications on the association between some genetic profiles (gene polymorphism) and the propensity to develop asthma, allergic diseases, or accelerated lung function decline with age. Ongoing studies are focusing on gene-environment interactions a crucial question to understand why some persons suffer more from the effect of air pollution than others.

Proper citation: SAPALDIA (RRID:SCR_013416) Copy   

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http://www.stritch.luc.edu/depts/path/residency/anatomic_pathology.htm#Neuropathology

THIS RESOURCE IS NO LONGER IN SERVICE, documented August 31, 2016. A medical center with a neuropathology research program focused on the normal and abnormal aging process of the central nervous system and a funding source for research. The center serves as a collection site for brains in order to study normal aging and neurodegenerative diseases like Alzheimer's.

Proper citation: Loyola University Medical Center / Hines VA Brain Bank (RRID:SCR_013277) 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   

•   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   

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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   

•   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

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