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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   

•   Source: SciCrunch Registry

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   

•   Source: SciCrunch Registry

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

The Vietnam Era Twin (VET) Registry is a closed cohort composed of approximately 7,000 middle-aged male-male twin pairs both of whom served in the military during the time of the Vietnam conflict (1964-1975). The Registry is a United States Department of Veterans Affairs (VA) resource that was originally constructed from military records; the Registry has been in existence for almost 20 years. It is one of the largest national twin registries in the US and currently has members living in all 50 states. Initially formed to address questions about the long-term health effects of service in Vietnam, the Registry has evolved into a resource for genetic epidemiological studies of mental and physical health conditions. Several waves of mail and telephone surveys have collected a wealth of health-related information on Registry twins, referred to as members. In addition to twins, selected adult offspring of twins and the mothers of those offspring are also VET Registry members. More recent data collection efforts have focused on specific sets of twin pairs and have conducted detailed clinical or laboratory testing. Selected Vietnam Era Registry Research Studies: * Veteran Health Study * VETSA 2: A Longitudinal Study of Cognitive Aging * Alcoholism Course thought Midlife: A Twin Family Study and Offspring of Twins: G, E and GxE Risk for Alcoholism * GE: Offspring of Twins with Substance Use Disorder * Mechanisms Linking Depression to Cardiovascular Risk (Twins Heart Study 2) * Post-traumatic Stress Disorder and Cardiovascular Disease * Biological Markers for Post-traumatic Stress Disorder (T3) * Memory and the Hippocampus in Vietnam-era Twins with PTSD (Time 3)

Proper citation: Vietnam Era Twin Registry (RRID:SCR_008807) Copy   

•   Source: SciCrunch Registry

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   

•   Source: SciCrunch Registry

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://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://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   

•   Source: SciCrunch Registry

http://brainmap.wisc.edu/monkey.html

NO LONGER AVAILABLE. Documented on September 17, 2019. A set of multi-subject atlas templates to facilitate functional and structural imaging studies of the rhesus macaque. These atlases enable alignment of individual scans to improve localization and statistical power of the results, and allow comparison of results between studies and institutions. This population-average MRI-based atlas collection can be used with common brain mapping packages such as SPM or FSL.

Proper citation: Rhesus Macaque Atlases for Functional and Structural Imaging Studies (RRID:SCR_008650) Copy   

•   Source: SciCrunch Registry

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   

•   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   

•   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   

•   Source: SciCrunch Registry

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

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