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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

http://www.framinghamheartstudy.org/

A longitudinal, epidemiologic study to identify the common risk factors or characteristics that contribute to cardiovascular disease by following its development over a long period of time in a large group of participants who had not yet developed overt symptoms or suffered a heart attack or stroke. Since that time the FHS has studied three generations of participants resulting in biological specimens and data from nearly 15,000 participants. Since 1994, two groups from minority populations, including related individuals have been added to the FHS. FHS welcomes proposals from outside investigators for data and biospecimens. The researchers recruited 5,209 men and women between the ages of 30 and 62 from the town of Framingham, Massachusetts, and began the first round of extensive physical examinations and lifestyle interviews that they would later analyze for common patterns related to CVD development. Since 1948, the subjects have continued to return to the study every two years for a detailed medical history, physical examination, and laboratory tests, and in 1971, the Study enrolled a second generation - 5,124 of the original participants'''' adult children and their spouses - to participate in similar examinations. In 1994, the need to establish a new study reflecting a more diverse community of Framingham was recognized, and the first Omni cohort of the Framingham Heart Study was enrolled. In April 2002 the Study entered a new phase, the enrollment of a third generation of participants, the grandchildren of the Original Cohort. In 2003, a second group of Omni participants was enrolled. Over the years, careful monitoring of the Framingham Study population has led to the identification of major CVD risk factors, as well as valuable information on the effects of these factors such as blood pressure, blood triglyceride and cholesterol levels, age, gender, and psychosocial issues. Risk factors for other physiological conditions such as dementia have been and continue to be investigated. In addition, the relationships between physical traits and genetic patterns are being studied. FHS clinical and research data is stored in the dbGaP and NHLBI Repository repositories and may be accessed by application. Please check the following repositories before applying for data through FHS. Investigators seeking data that is not available through dbGaP or BioLINCC or seeking biological specimens may submit a proposal through the FHS web-based research application. The FHS data repository may be accessed through this FHS website, under the For Researchers link, then Description of Data, in order to determine if and how the desired data is stored. Proposals may involve the use of existing data, the collection of new data, either directly from participants or from previously collected samples, images, or other materials (e.g., medical records). The FHS Repository also has biological specimens available for genetic and non-genetic research proposals. Specimens include urine, blood and blood products, as well as DNA.

Proper citation: Framingham Heart Study (RRID:SCR_008963) Copy   

•   Source: SciCrunch Registry

http://www.norc.org/Research/Projects/Pages/national-social-life-health-and-aging-project.aspx

A longitudinal, population-based study of health and social factors, aiming to understand the well-being of older, community-dwelling Americans by examining the interactions among physical health and illness, medication use, cognitive function, emotional health, sensory function, health behaviors, social connectedness, sexuality, and relationship quality. NSHAP provides policy makers, health providers, and individuals with useful information and insights into these factors, particularly on social and intimate relationships. The study contributes to finding new ways to improve health as people age. In 2005 and 2006, NORC and Principal Investigators at the University of Chicago conducted the first wave of NSHAP, completing more than 3,000 interviews with a nationally representative sample of adults aged 57 to 85. In 2010 and 2011, nearly 3,400 interviews were completed for Wave 2 with these Wave 1 Respondents, Wave 1 Non-Interviewed Respondents, and their spouses or cohabiting romantic partners. The second wave of NSHAP is essential to understanding how social and biological characteristics change. NSHAP, by eliciting a variety of information from respondents over time, provides data that will allow researchers in a number of fields to examine how specific factors may or may not affect each other across the life course. For both waves, data collection included three measurements: in-home interviews, biomeasures, and leave-behind respondent-administered questionnaires. The face-to-face interviews and biomeasure collection took place in respondents'''' homes. NSHAP uses a national area probability sample of community residing adults born between 1920 and 1947 (aged 57 to 85 at the time of the Wave 1 interview), which includes an oversampling of African-Americans and Hispanics. The NSHAP sample is built on the foundation of the national household screening carried out by the Health and Retirement Study (HRS) in 2004. Through a collaborative agreement, HRS identified households for the NSHAP eligible population. A sample of 4,400 people was selected from the screened households. NSHAP made one selection per household. Ninety-two percent of the persons selected for the NSHAP interview were eligible. For Wave 2 in 2010 and 2011, NSHAP returned to Wave 1 Respondents and eligible non-interviewed respondents from Wave 1 (Wave 1 Non-Interviewed Respondents). NSHAP also extended the Wave 2 sample to include the cohabiting spouses and romantic partners of Wave 1 Respondents and Wave 1 Non-Interviewed Respondents. Partners were considered to be eligible to participate in NSHAP if they resided in the household with the Wave 1 Respondent/Wave 1 Non-Interviewed Respondent at the time of the Wave 2 interview and were at least 18 years of age. Wave I biomeasures: height; weight; waist circumference; blood pressure; smell; taste; vision; touch; respondent-administered vaginal swabs; oral mucosal transudate (OMT) for HIV-1 antibody screening; saliva; ����??get up and go����??; and blood spots. Technological advances in biomeasure collection methods have decreased respondent burden and increased ease of collection, storage, and yield of various biomeasures for the second wave of NSHAP. Wave II biomeasures: anthropometrics, including height, hip and waist circumference, and weight; cardiovascular function, including blood pressure, heart rate variability, and pulse; 2 of the 3 components of the short physical performance battery (SPPB) including chair stands and a timed walk; sensory function including smell; and actigraphy. In addition, we collect dried blood spots, microtainer blood, passive drool and salivettes, urine, and respondent-administered vaginal swabs, each of which are analyzed using multiple assays for a variety of measures and rationales. Furthermore, we assess respondents����?? cognition using the Montreal Cognitive Assessment (MoCA). Data Availability: NSHAP data made available to the public does not contain any identifiable respondent information and uses code numbers instead of names for all data. De-identified data from the 2005 and 2006 interviews are available to researchers through the National Archive of Computerized Data on Aging, located within Inter-University Consortium for Political and Social Research (ICPSR). Data from the Wave 2 interviews in 2010 and 2011 will be available in the summer of 2012. * Dates of Study: 2005-2006, 2010-2011 * Study Features: Biospecimens, Anthropometric Measures * Sample Size: ** Wave 1: 3,005 ** Wave 2: 3,377 Links: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/20541

Proper citation: National Social Life Health and Aging Project (NSHAP) (RRID:SCR_008950) Copy   

•   Source: SciCrunch Registry