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http://www.niaaa.nih.gov/research/major-initiatives/collaborative-studies-genetics-alcoholism-coga-study

Database and biorepository from a multi-site, multi-disciplinary study characterizing the familial transmission of alcoholism and related phenotypes and identifying susceptibility genes using genetic linkage. Investigators have assembled a collection of over 300 extended families densely affected by alcoholism (more than 3000 individuals), including clinical, neuropsychological, electrophysiological, biochemical, and genetic data, and established a repository of immortalized cell lines from these individuals, to serve as a permanent source of DNA for genetic studies. NIAAA has funded the Collaborative Studies on Genetics of Alcoholism (COGA) since 1989, with the goal of identifying the specific genes underlying this vulnerability. Data and biomaterials are available to qualified investigators in the broader scientific community. Recipients of data and biomaterials will be responsible for defraying the cost of their distribution. Pedigrees densely affected with alcoholism (DSM-III-R) have been ascertained at six sites (SUNY Downstate Health Sciences Center, University of Connecticut, Indiana University, Washington University, University of Iowa, and The University of California at San Diego). Diagnoses of alcohol dependence according to several diagnostic systems (e.g., DSM-III-R, Feighner, ICD-10) are made based on examination of medical records and direct assessment using the Semi-Structured Assessment for Genetics of Alcoholism (SSAGA). Nuclear and extended pedigrees containing at least two alcohol-dependent first-degree relatives in addition to an alcohol dependent proband (with all affected individuals meeting both DSM-IIIR and Feighner criteria) have been ascertained. Clinical data comprises anonymous data on family structure, age, sex, vital status, psychopathology, diagnosis, other clinically relevant information, are stored, maintained, and distributed by Washington University. Research data, consist of data on blood biochemistry and psychological test performance, which are stored, maintained, and distributed by Washington University, and brain electrophysiological data, which are stored, maintained, and distributed by SUNY. Genetic analysis data, consisting of marker genotypes, along with results of previous genetic analyses of COGA data, are stored, maintained, and distributed by Washington University. Biomaterials, consisting of lymphoblastoid cell lines and DNA from participating subjects are stored, maintained, and distributed by Rutgers University. Researchers may gain access to clinical data, research data, genetic analysis data, and biomaterials, subject to NIAAA approval, by completing an application details available from the website. After access certification, the principal investigator will be given access to electronic data files and other documentation.

Proper citation: Collaborative Studies on Genetics of Alcoholism (RRID:SCR_006841) Copy   

•   Source: SciCrunch Registry

http://ki.se/ki/jsp/polopoly.jsp?d=29346&a=80149&l=en

THIS RESOURCE IS NO LONGER IN SERVCE, documented September 2, 2016. CEFAM: Risk factors for atherosclerosis and cardiovascular disease, a randomized controlled study among women from the Middle East and Latin America. The study aims to analyze how two different physical activity programs in overweight and sedentary immigrant women influence changes in biomarkers related to glucose- and lipid metabolism, stress related hormone production, sub clinical inflammation, chronic cyclooxygenase mediated inflammation and oxidative stress.

Proper citation: KI Biobank - CEFAM (RRID:SCR_006044) Copy   

•   Source: SciCrunch Registry

http://www.ppmi-info.org/

An observational longitudinal clinical study partnership to identify and validate biomarkers of Parkinson disease (PD) progression and provide easy and open web-based access to the comprehensive set of correlated clinical data and biospecimens, information, and biosamples acquired from PD and age and gender matched healthy control subjects to the research community. The data and specimens have been collected in a standardized manner under strict protocols and includes clinical (demographic, motor and non-motor, cognitive and neurobehavioral), imaging (raw and processed MRI, SPECT and DAT), and blood chemistry and hematology subject assessments and biospecimen inventories (serum, plasma, whole blood, CSF, DNA, RNA and urine). All data are de-identified to protect patient privacy. PPMI will be carried out over five years at 21 clinical sites in the United States and Europe and requires the participation of 400 Parkinson's patients and 200 control participants. The PPMI database provides researchers with access to correlated clinical and imaging data, along with annotated biospecimens, all available within an open access system that encourages data sharing (http://www.ppmi-info.org/access-data-specimens/). The website hosts an Ongoing Analysis section to keep the scientific community apprised of analyses being completed, in hopes of stimulating collaborations between researchers who are using PPMI data and specimens.

Proper citation: Parkinson's Progression Markers Initiative (RRID:SCR_006431) 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/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

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.bioserve.com/

A biomaterial supply resource containing over 600,000 samples of human tissue, serum, DNA, and RNA. Samples are handled consistently according to validated protocols and each tissue sample comes with detailed demographic information, gold standard clinical diagnostic information, complete drug history, full pathology reports, and complete phenotypic data.

Proper citation: Bioserve Global BioRepository (RRID:SCR_008713) 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

http://www.tissuebank.com/

PathServe Autopsy And Human Tissue Bank is a tissue supplier for bioresearch and educational institutions. It was established in 1990 in order to better satisfy the needs of Bay Area hospitals using inexpensive and reliable postmortem examinations. Today we''ve grown into a multidepartmental organization; serving nationwide as a human tissue supplier to biotech and neuropathological research institutions as well as a centralized autopsy provider to private citizens and local hospitals.

Proper citation: PathServe (RRID:SCR_010695) Copy   

•   Source: SciCrunch Registry

http://www.dna-network.ac.uk/

THIS RESOURCE IS NO LONGER IN SERVICE, documented on October 6, 2011. A project to collect, store and study DNA samples from tens of thousands of healthy volunteers and patients with diseases of major public importance. It aims to identify genes that are risk factors for the conditions. The network consists of 13 collections led by different clinicians throughout the UK. At its heart is an archive infrastructure which manages the DNA and the information associated with it. The European Collection of Cell Cultures in Porton Down handles the blood, peripheral blood lymphocytes and EBV-transformed cell lines, while the Centre for Integrated Genomic Medical Research at Manchester University manages the DNA. These banked samples are available to UK and international researchers, who can examine data and set up collaborative work by registering at the DNA Network's website. The conditions for which samples are currently collected and stored are: Acute leukemia, Asthma and eczema, Late onset Alzheimer's disease, Breast cancer, Colorectal cancer, Coronary artery disease, Glomerulonephritis, Hypertension, Age-related macular degeneration, Multiple sclerosis, Parkinson's disease, Type 2 diabetes, Unipolar depression.

Proper citation: UK DNA Banking Network (RRID:SCR_010619) Copy   

•   Source: SciCrunch Registry

http://www.cartagene.qc.ca/en

As both the public health survey of Quebec, and the Quebec resource for scientists interested in personalized medicine, genomics and public health, this public resource operates under a governance framework and consists of a databank and a biobank. The database contains environmental, demographic and health data. The biobank contains DNA, blood and urine samples. Access to CARTaGENE will be granted to researchers who are seeking to better understand how genes interact with other genes, with the environment and with lifestyle factors. They have collected in-depth information on over 20 000 Quebecers, including 446 sociodemographic, life-style and health data, 190 physiological parameters, 22 types of biochemical analyses and 41 types of haematological analyses. They have also collected 11 types of blood, plasma, serum and urine samples from most participants. Genealogical reconstruction of recruited participants, in collaboration with BALSAC Project, is also possible. CARTaGENE data and samples include the following: Health Questionnaire, Physical measures, Biochemical and hematological analysis, Biological samples stored in the Biobank. CARTagene is currently contacting participants (who have agreed to be recontacted) to collect additional data on environmental exposure. Data on dietary habits will be collected during the second phase of this component which will begin soon. Any scientific researcher working in a public or private organization at the national or international level may apply for access to CARTaGENE samples or data.

Proper citation: CARTaGENE (RRID:SCR_010614) Copy   

•   Source: SciCrunch Registry

http://www.istge.it/crb/english.htm

The Centro di Risorse Biologiche (CRB-IST), institutional facility of IST, has been recently established by the General Director (Deliberation number 624 July 11, 2008). It aims at co-ordinating already existing biobanking activities, and participating in the European Infrastructure of Biobanks and Biomolecular Resources (BBMRI), in preparation in the frame of the 7th FP of the European Community. Aims: * to facilitate high quality translational research dependent on biological material and data * to address ethical issues on biobanking * to promote the project at the population level * to co-ordinate the IST biobanks and cell banks * to harmonize technical and management SOPs, according to international best practices * to help reduce costs for collection and storage of biological material * to favor institutional recognition at a regional, national and international level - to sustain the role of the Institute in the European infrastructure.

Proper citation: Biological Resource Centre - National Institute for Cancer Research (RRID:SCR_010548) Copy   

•   Source: SciCrunch Registry

http://www.chernobyltissuebank.com/

The CTB (Chernobyl Tissue Bank) is an international cooperation that collects, stores and disseminates biological samples from tumors and normal tissues from patients for whom the aetiology of their disease is known - exposure to radioiodine in childhood following the accident at the Chernobyl power plant. The main objective of this project is to provide a research resource for both ongoing and future studies of the health consequences of the Chernobyl accident. It seeks to maximize the amount of information obtained from small pieces of tumor by providing multiple aliquots of RNA and DNA extracted from well documented pathological specimens to a number of researchers world-wide and to conserve this valuable material for future generations of scientists. It exists to promote collaborative, rather than competitive, research on a limited biological resource. Tissue is collected to an approved standard operating procedure (SOP) and is snap frozen; the presence or absence of tumor is verified by frozen section. A representative paraffin block is also obtained for each case. Where appropriate, we also collect fresh and paraffin-embedded tissue from loco-regional metastases. Currently we do not issue tissue but provide extracted nucleic acid, paraffin sections and sections from tissue microarrays from this material. The project is coordinated from Imperial College, London and works with Institutes in the Russian Federation (the Medical Radiological Research Centre in Obninsk) and Ukraine (the Institute of Endocrinology and Metabolism in Kiev) to support local scientists and clinicians to manage and run a tissue bank for those patients who have developed thyroid tumors following exposure to radiation from the Chernobyl accident. Belarus was also initially included in the project, but is currently suspended for political reasons.

Proper citation: Chernobyl Tissue Bank (RRID:SCR_010662) Copy   

•   Source: SciCrunch Registry

http://www.oucom.ohiou.edu/Biorepository/biorepository_inventory.htm

Plasma and cell fractions obtained from patients with Diabetes and endocrine diseases and their first degree relatives who agreed to participate in the development of the biorepository. Plasma is aliquoted into multiple specimen containers and stored at -80C. Cell fractions are subjected to DNA and RNA fractionation, aliquoted into multiple specimen containers, and frozen at -70 to -80 degrees centigrade. Anyone who would like to obtain samples from the Biorepository must provide evidence that they have adequate training in the use of bloodborne pathogens, as outlined by OSHA. The investigator must agree to indemnify and hold harmless the Ohio University Diabetes/Endocrine Diseases Biorepository, the Appalachian Rural health Institute, and the Ohio University College of Osteopathic Medicine from any claims, liability, costs, and damages.

Proper citation: Ohio U Diabetes Endocrine Biorepository (RRID:SCR_013435) 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