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http://www.ncri.org.uk/ccb/index.html

The Confederation of Cancer Biobanks (CCB) is a consortium of organisations based in the UK that are involved in the development, management and use of biobank resources for cancer research. The Confederation aims to promote and disseminate a collective view on best practices for biobanks and to promote transfer of knowledge and experiences between banks. While individual banks retain their full autonomy, membership leads to mutual benefit, ensures complementarities, avoids unnecessary competition and ensures a coordinated approach to cancer biosample provision. This will benefit all involved by allowing the sharing of expertise and information, the establishment of harmonized standards for the operation of cancer biobanks and provide a means to access a larger pool of biosamples from the confederated banks. The initial achievements of the NCRI Confederation of Cancer Biobanks were the drafting of a Memorandum of Understanding for the founder members of the Confederation, and a document outlining the Guiding Principles for the management and operation of a tissue bank / biobank in the contemporary ethical and legal setting. Any organization based in the UK, which collects and distributes biosamples for cancer research (not necessarily in the UK), may apply to join. CCB Members receive: * access to the Members Area of the web site containing shared resources * inclusion in email discussion fora with other members * networking opportunities with other members * inclusion in a collective voice to research funders, policy makers, legislators and others * inclusion in the NCRI''s new on-line sample directory * one free registration for each CCB workshop * a future opportunity to pursue accreditation/quality endorsement for the bank * a potential future opportunity for your donors to join a donor forum, which provides patients/sample donors with a mechanism of keeping in touch with research biobanking activities.

Proper citation: Confederation of Cancer Banks (RRID:SCR_006885) Copy   

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http://ki.se/en/meb/the-child-and-adolescent-twin-study-in-sweden-catss

Data and biomaterial from a study investigating how both genetic and environmental effects influence health and behavior in children and adolescents. In this study parents to all Swedish twins turning 9 or 12 years are asked to complete a telephone interview concerning the health and behavior of their twins. The interview screens for several different health (e.g., asthma, allergies, diabetes) and behavior (e.g., attention, social interaction) problems. Some of the families will be followed up with additional questionnaires, as well as with genotyping and clinical interviews. The response frequency of the telephone interview is 80%. By November 2008, 7408 interviews had taken place. Types of samples * Saliva alt. EDTA whole blood * DNA Number of sample donors: 10 721 (June 2010)

Proper citation: CATSS - Child and Adolescent Twin Study in Sweden (RRID:SCR_005945) Copy   

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http://ki.se/ki/jsp/polopoly.jsp?d=29354&a=66742&l=en

THIS RESOURCE IS NO LONGER IN SERVICE, documented on July 03, 2014. A study that is a follow-up of the CATSS study and includes 15-year old twins who have been identified with autism, ADHD, learning-, eating-, tics disorders, compulsion-, defiance-, conduct- or motor control problems. The study also includes the co-twin, controls and the parents. DNA will be collected from the twins and the parents. For the twins, both a saliva sample and capillary blood samples will be collected, and for the parents, a saliva sample will be collected. Types of samples * Saliva alt. capillary blood * DNA Number of sample donors: 764 (June 2010)

Proper citation: DOGSS (RRID:SCR_005946) Copy   

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http://www.alz.washington.edu/

A clinical research, neuropathological research and collaborative research database that uses data collected from 29 NIA-funded Alzheimer's Disease Centers (ADCs). The database consists of several datasets, and searches may be done on the entire database or on individual datasets. Any researcher, whether affiliated with an ADC or not, may request a data file for analysis or aggregate data tables. Requested aggregate data tables are produced and returned as soon as the queue allows (usually within 1-3 days depending on the complexity).

Proper citation: National Alzheimer's Coordinating Center (RRID:SCR_007327) Copy   

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http://ccr.coriell.org/nia/

A cell repository containing cells and DNA for studies of aging and the degenerative processes associated with it. Scientists use the highly-characterized, viable, and contaminant-free cell cultures from this collection for research on such diseases as Alzheimer's disease, progeria, Parkinson's disease, Werner syndrome, and Cockayne syndrome. The collections of the Repository include DNA and cell cultures from individuals with premature aging disorders, as well as DNA from individuals of advanced age from the the Baltimore Longitudinal Study of Aging at the Gerontology Research Center and other Longevity Collections. The Repository also includes samples from an Adolescent Study of Obesity, Apparently Healthy Controls, Animal Models of Aging, and both human and animal differentiated cell types. The cells in this resource have been collected over the past three decades using strict diagnostic criteria and banked under the highest quality standards of cell culture. Scientists can use the highly-characterized, viable, and contaminant-free cell cultures from this collection for genetic and cell biology research.

Proper citation: Aging Cell Repository (RRID:SCR_007320) Copy   

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http://ki.se/ki/jsp/polopoly.jsp?d=29354&a=31618&l=en

THIS RESOURCE IS NO LONGER IN SERVICE, documented August 23, 2016. The aim of the study is to estimate the importance of genetic (primary) and environmental factors for economic behavior by conducting a series of standard behavioral economics experiments on a sample of twins from the Swedish Twin Registry.

Proper citation: KI Biobank - Economical Behavior (RRID:SCR_005934) Copy   

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http://ki.se/ki/jsp/polopoly.jsp?d=29332&a=103697&l=en

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on May 3rd,2023. Recently it has been discovered that specific Single Nucleotide Polymorphisms (SNPs) may elevate the risk of developing prostate cancer. This study aims at investigating whether it is possible to use these SNPs in a clinical setting in order to sharpen the diagnostic tools when investigating if a man has prostate cancer. By collecting blood from men who have undergone a needle biopsy of the prostate and do a SNP analysis of their genes and compare this with the result of the biopsy and PSA result we hope to be able to develop a test that is more specific than the routine that is being used today. Sample types: * EDTA whole blood * DNA Number of sample donors: 5321 (June 2010)

Proper citation: SPSAC - Stockholm PSA Cohort (RRID:SCR_006042) Copy   

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http://ki.se/ki/jsp/polopoly.jsp?d=29346&a=103574&l=en

THIS RESOURCE IS NO LONGER IN SERVICE, documented September 2, 2016. Cardiovascular disease and periodontitis are common diseases, causing considerable suffering and costs. Despite strong links between the two diseases it is unclear if periodontitis causes cardiovascular disease. The primary aims are to investigate whether periodontitis is a risk factor for the development of myocardial infarction and if periodontitis increases the risk for new cardiovascular events such as myocardial infarction, stroke and death in patients with a previous myocardial infarction. PAROKRANK is a case control study. Cases (n=1500) are patients with a first myocardial infarction and controls population derived people without cardiovascular disease(n=1500). Both groups are subjected to predefined dental examinations, analyses of a variety of risk factors and a biobank of blood and dental samples will be established. Information is collected from available registries (RIKS-HIA and SEPHIA) and study specific records.

Proper citation: KI Biobank - PAROKRANK (RRID:SCR_006045) Copy   

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http://ki.se/ki/jsp/polopoly.jsp?d=29332&a=103566&l=en

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on May 3rd, 2023. The ICAP - Integrated analysis of prostate cancer study aims at identifying a set of biomarkers with high prognostic value for prostate cancer progression. These biomarkers will be used to customize treatment and to identify patients with high risk of recurrent disease. Sample types: * EDTA whole blood * DNA Number of sample donors: 505 (sample collection completed)

Proper citation: ICAP - Integrated analysis of prostate cancer (RRID:SCR_006035) Copy   

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http://ki.se/ki/jsp/polopoly.jsp?d=29332&a=103538&l=en

THIS RESOURCE IS NO LONGER IN SERVICE, documented August 23, 2016. Libro-1 is a study with the overall aim to identify prognostic factors for breast cancer. The study comprise women in the Stockholm-Gotland region that were diagnosed with breast cancer between the years 2001-2008. Register data (tumor characteristics and treatment), lifestyle factors and blood samples have been collected from the participants.

Proper citation: LIBRO-1: Individualized prediction and prevention of breast cancer (RRID:SCR_006036) Copy   

•   Source: SciCrunch Registry

http://www.procap.ki.se/procap_studie_info.htm

PROCAP is a study of the importance of lifestyle and genetic factors in the progression of localized cancer of the prostate. Our study hypothesis is that the likelihood of disease recurrence of prostate cancer is modified or determined by genetic variation in the human genome and/or lifestyle factors. To be able to test our hypothesis, we are using a large, population-based cohort of men with localized prostate cancer in Sweden, recruited in 1997-2002, from which detailed clinical information and data on progression already have been collected. From this cohort, we are collecting lifestyle data and blood samples from 8,500 men. If men with progressive prostate cancer could be identified on their genetic make-up, they could be given additional therapies targeted specifically at prostate cancer progression or monitored even more frequently so that progressions could be treated even earlier. If lifestyle factors are important, these results have an impact on recommendations given to men with newly diagnosed prostate cancer. In the study, we are asking the study persons to fill in an Internet-based questionnaire focusing on diet and physical activity and we ask them to leave 2 test tubes of blood at their local urologist/health care center. The pilot study has recently been completed and evaluated and the remaining 7,500 men in the cohort will be included during 2007 and 2008. So far, we have a response rate of approximately 85% on the blood samples. The response rate for the questionnaire is approximately 80% (both in the web based and paper based versions combined). Genotyping and analysis will begin in the fall of 2008. Sample types: * EDTA whole blood * Plasma * DNA Number of sample donors: 5492 (sample collection completed)

Proper citation: KI Biobank - PROCAP (RRID:SCR_006038) Copy   

•   Source: SciCrunch Registry

http://ki.se/en/meb/cancer-of-the-prostate-in-sweden-caps

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on May 3rd,2023. We have completed the recruitment of this population-based prostate cancer case-control study, one of the largest prostate cancer case-control study populations available so far. This study population was recruited in two phases. The inclusion and exclusion criteria were the same for the first (CAPS1) and second phase (CAPS2), except for the timeframe. In total, 3,030 cases and 1,960 controls participated in CAPS donating blood samples and answering a questionnaire during 2001-2003. In addition we have detailed clinical information on all 3,000 cases. With data generated from CAPS we have 25 published papers and 10 manuscripts since 2004. During 2006 we completed a record linkage to the Cause of Death Registry to determine the cause of death for all participants. We could conclude that 347 of the cases in CAPS had died of prostate cancer. The CAPS study has provided data to several new studies on markers on prostate cancer progression. Sample types: * EDTA whole blood * DNA Number of sample donors: 5015 (sample collection completed)

Proper citation: Cancer of the Prostate in Sweden (CAPS) (RRID:SCR_006033) Copy   

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http://ki.se/imm/cefalo-studien

Saliva taken from participants in a study investigating the association between environmental exposures and brain tumors in children aged 7-19 years and the interaction between these risk factors and genetic polymorphisms, which may confer susceptibility to effects of exogenous agents. Sample types: * Saliva Number of sample donors: 886 (sample collection completed)

Proper citation: KI Biobank - CEFALO (RRID:SCR_006034) Copy   

•   Source: SciCrunch Registry

http://lasurvey.rand.org/

A dataset of a panel study of a representative sample of all neighborhoods and households in Los Angeles County, with poor neighborhoods and families with children oversampled, for investigating the social and economic determinants of health and race and ethnic disparities. The study follows neighborhoods over time, as well as children and families. Two waves have been conducted to date, in 2000-2001 (L.A.FANS 1) and again beginning in 2006 through early 2009 (L.A. FANS 2). L.A.FANS-2 will significantly enhance the utility of the L.A.FANS data for studies of adult health disparities by: 1) Replicating self-reported health measures from L.A.FANS-1 and collecting new self-reports on treatment, health behaviors, functional limitations, quality and quantity of sleep, anxiety, health status vignettes, and changes in health status since the first interview; 2) Collecting physiological markers of disease and health status, including diabetes, hypertension, obesity, lung function, immune function, and cardiovascular disease; and 3) Expanding the data collected on adults'' work conditions, stressful experiences, and social ties. Wherever possible, L.A.FANS uses well-tested questions or sections from national surveys, such as the Health and Retirement Study (HRS), Panel Study of Income Dynamics (PSID), National Longitudinal Surveys (NLS), and National Health Interview Survey (NHIS), and other urban surveys, such as the Project on Human Development in Chicago Neighborhoods, to facilitate comparisons. Data Availability: Public use data, study design, and questionnaire content from L.A.FANS are available for downloading. Researchers can also apply for a restricted use version of the L.A.FANS-1 data that contain considerable contextual and geographically-referenced information. Application procedures are described at the project Website. L.A.FANS-2 fieldwork was completed at the end of 2008. The PIs anticipate L.A.FANS-2 public use data will be released in summer 2009. * Dates of Study: 2000-2008 * Study Features: Longitudinal, Minority Oversamples, Anthropometric Measures, Biospecimens * Sample Size: ** 2000-1: 2,548 (L.A.FANS 1) ** 2006-8: ~3,600 (L.A.FANS 2) Link: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/00172

Proper citation: Los Angeles Family and Neighborhood Survey (RRID:SCR_008923) Copy   

•   Source: SciCrunch Registry

http://ki.se/ki/jsp/polopoly.jsp?d=29350&a=31591&l=en

THIS RESOURCE IS NO LONGER IN SERVICE, documented August 23, 2016. The aim of the study is to improve the understanding of psychiatric co-morbidity and personality traits as a means to improving prevention and treatment for women with hereditary vulnerability to develop alcohol and / or drug dependence. In depth phenotypic assessment through structured interviews with women with alcohol or drug abuse in order to assess history, psychiatric morbidity and personality traits potentially related to environmental and/or hereditary alcoholism. Association studies of polymorphic markers in candidate genes. Blood samples and interviews performs on 200 women with alcohol dependents to examine mental illness and specific personality characteristics associated to environment and/or hereditary form of alcoholism. Blood samples are also collected from 200 healthy women which functions as controls.

Proper citation: KI Biobank - ALF (RRID:SCR_008880) Copy   

•   Source: SciCrunch Registry

http://www.nia.nih.gov/research/intramural-research-program/dynamics-health-aging-and-body-composition-health-abc

A study that characterizes the extent of change in body composition in older men and women, identifies clinical conditions accelerating these changes, and examines the health impact of these changes on strength, endurance, disability, and weight-related diseases of old age. The study population consists of 3,075 persons age 70-79 at baseline with about equal numbers of men and women. Thirty-three percent of the men are African-Americans as are 46% of the women. All persons in the study were selected to be free of disability in activities of daily living and free of functional limitation (defined as any difficulty walking a quarter of a mile or any difficulty walking up 10 steps without resting) at baseline. The core yearly examination for HEALTH ABC includes measurement of body composition by dual energy x-ray absorptio��������metry (DXA), walking ability, strength, an interview that includes self-report of limitations, a medication survey, and weight (Measurements in the Health ABC Study). Provision has been made for banking of blood specimens and extracted DNA (HealthABC repository). Study investigators are open to collaboration especially for measures focused on obesity and associated weight-related health conditions including osteoporosis, osteoarthritis, pulmonary function, cardiovascular disease, vascular disease, diabetes and glucose intolerance, and depression. The principal goals of the HEALTH ABC are: # To assess the association of baseline body weight, lean body mass, body fat, and bone mineral content, in relation to weight history, with: incident functional limitation; incidence and change in severity of weight-related health conditions; recovery of physical function after an acute event; baseline measures of strength, fitness and physical performance; gender, ethnicity and socioeconomic status # To access the contribution of episodes of severe acute illness in healthier older persons to changes in body weight, bone mineral content, lean body mass and body fat, and the relationship of these episodes to risk of functional limitation and recovery. # To assess the impact of weight-related co-morbid illness on the risk of functional limitation and recovery. # To assess the ways in which physiologic mediators of change in body composition influence and are influenced by changes in health in older adults and contribute to change in body composition; to understand how changes in body composition affect weight-related cardiovascular disease risk factors such as lipids, blood pressure and glucose tolerance. # To assess the interdependency of behavioral factors, such as nutrition and physical activity, co-morbid health conditions, and their association with change in body composition in old age. # To provide a firm scientific basis for understanding issues related to weight recommendations in old age through increased knowledge of the potential trade-offs between weight and risk of functional limitation, disability, morbidity and death; to provide information critical for developing effective strategies for the maintenance of health in older persons.

Proper citation: Dynamics of Health Aging and Body Composition (Health ABC) (RRID:SCR_008813) Copy   

•   Source: SciCrunch Registry

http://ki.se/sites/default/files/str_artikel_tchad.pdf

Data and biomaterial from a longitudinal study of 1,500 Swedish twin pairs from age 8 to age 20. Twins, parents, and teachers responded to 4 waves of questionnaires (1994, 1999, 2002, 2006) and a clinical interview. In the last follow up (2006) 1325 biological samples for DNA-extraction were collected. A paper that describes the study was published (Lichtenstein, Tuvblad, Larsson, Carlstrom, 2007, Twin Research and Human Genetics). Twins were followed prospectively from childhood to emerging adulthood. The data include a broad spectrum of measures of environments as well as internalizing and externalizing problems behaviors from different informants (twins, parents, teachers, clinical assessments).

Proper citation: Twin Study of Child and Adolescent Development - TCHAD (RRID:SCR_008897) Copy   

•   Source: SciCrunch Registry

http://hrsonline.isr.umich.edu/

A data set of a longitudinal panel study of health, retirement, and aging that surveys a representative sample of more than 26,000 Americans over the age of 50 every two years. The HRS explores the changes in labor force participation and the health transitions that individuals undergo toward the end of their work lives and in the years that follow. The study captures a dynamic picture of an aging America''s physical and mental health, insurance coverage, financial status, family support systems, labor market status, and retirement planning. The sample in 2006 numbered over 22,000 persons in 13,100 households, with oversamples of Hispanics, Blacks and Florida residents. Beginning in 2006, half the sample received enhanced face-to-face follow-ups that included the collection of physical measures and biomarkers HRS provides a research data base that can simultaneously support continuous cross-sectional descriptions of the US population over the age of fifty-five, longitudinal studies of a given cohort over a substantial period of time (up to 18 years by 2010 for the original HRS cohort, following them from age 51-61 to age 69-79) and research on cross-cohort trends. By 2010 the HRS will be able to support cross-cohort comparisons of trajectories of health, labor supply, or wealth accumulation for persons who entered their 50s in 1992, 1998 and 2004. The HRS also has provided the sampling frame for targeted sub-studies. The Aging, Demographics, and Memory Study (ADAMS) supplement on dementia involved a field assessment of a sample of about 930 HRS panel members aged 75+ to clinically assess their dementia status and dementia severity. Special topics including consumption and time use, prescription drug use and the impact of Medicare Part D, parents'' human capital investments in children, and diabetes management by self-reported diabetics, have appeared on mail surveys that have used the HRS as a sampling frame. The HRS also can accommodate a number of experimental topics using Internet interviewing. The HRS is also characterized by links to a rich array of administrative data, including: Employer Pension Plans; National Death Index; Social Security Administration earnings and (projected) benefits data; W-2 self-employment data; and Medicare and Medicaid files. The HRS has actively collaborated with other longitudinal studies of aging in other countries (e.g., ELSA, SHARE, MHAS), providing both scientific and technical assistance. Data Availability: All publicly available data may be downloaded after registration. Early Release data files are typically available within three months of the end of each data collection, with the Final Release following at 24 months after the close of data collection activities. Files linked with administrative data are released only as restricted data through an application process, as outlined on the HRS website. * Dates of Study: 1992-present * Study Features: Longitudinal, Minority Oversamples, Anthropometric Measures, Biospecimens * Sample Size: 22,000+ Link * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06854

Proper citation: Health and Retirement Study (RRID:SCR_008930) Copy   

•   Source: SciCrunch Registry

http://www.cristudy.org/Chronic-Kidney-Disease/Chronic-Renal-Insufficiency-Cohort-Study/

A prospective observational national cohort study poised to make fundamental insights into the epidemiology, management, and outcomes of chronic kidney disease (CKD) in adults with intended long-term follow up. The major goals of the CRIC Study are to answer two important questions: * Why does kidney disease get worse in some people, but not in others? * Why do persons with kidney disease commonly experience heart disease and stroke? The CRIC Scientific and Data Coordinating Center at Penn receives data and provides ongoing support for a number of Ancillary Studies approved by the CRIC Cohort utilizing both data collected about CRIC study participants as well as their biological samples. The CRIC Study has enrolled over 3900 men and women with CKD from 13 recruitment sites throughout the country. Following this group of individuals over the past 10 years has contributed to the knowledge of kidney disease, its treatment, and preventing its complications. The NIDDKwill be extending the study for an additional 5 years, through 2018. An extensive set of study data is collected from CRIC Study participants. With varying frequency, data are collected in the domains of medical history, physical measures, psychometrics and behaviors, biomarkers, genomics/metabolomics, as well as renal, cardiovascular and other outcomes. Measurements include creatinine clearance and iothalamate measured glomerular filtration rate. Cardiovascular measures include blood pressure, ECG, ABI, ECHO, and EBCT. Clinical CV outcomes include MI, ischemic heart disease-related death, acute coronary syndromes, congestive heart failure, cerebrovascular disease, peripheral vascular disease, and composite outcomes. The CRIC Study has delivered in excess of 150,000 bio-samples and a dataset characterizing all 3939 CRIC participants at the time of study entry to the NIDDKnational repository. The CRIC Study will also be delivering a dataset to NCBI''''s Database for Genotypes and Phenotypes.

Proper citation: Chronic Renal Insufficiency Cohort Study (RRID:SCR_009016) Copy   

•   Source: SciCrunch Registry

http://www.centreducancer.be/en/show/index/section/8/page/34

When a patient suffering or thought to be suffering from cancer is cared for, samples are often taken to determine the precise diagnosis and to determine any treatment necessary. After this essential stage of the patient''s care, unused biological material is sometimes left over. This material is an essential and precious tool for research into cancer. For this reason, patients can decide to make the material available to researchers the world over who study either the development mechanism of cancer or the new treatments available. Residual samples are centralized and stored in the Tumor Bank at the Cliniques Universitaires Saint-Luc Cancer Centre. The research carried out on this material primarily benefits cancer patients. It can help improve existing treatments or discover new drugs, and also allows new diagnostic tools to be tested. Any financial profits obtained from assessing the results obtained are entirely reinvested in the work of the Cancer Centre''s Tumour Bank and in new research projects at the Catholic University of Louvain. Using and sharing material, and verification and retrospective analysis of clinical data, all comply with strict rules. As with donations of blood, marrow or organs, an Ethics Committee oversees the operations of the Tumour Bank and research projects. This committee is responsible for ensuring compliance with current Belgian and legal texts, especially those concerning the protection of patient privacy and rights.

Proper citation: Saint-Luc Tumour Bank (RRID:SCR_008714) Copy   

•   Source: SciCrunch Registry