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The UK DNA Banking Network (UDBN) is a secondary biobank: it aggregates and manages resources (samples and data) originated by others. The network comprises, on the one hand, investigator groups led by clinicians each with a distinct disease specialism and, on the other hand, a research infrastructure to manage samples and data. The infrastructure addresses the problem of providing secure quality-assured accrual, storage, replenishment and distribution capacities for samples and of facilitating access to DNA aliquots and data for new peer-reviewed studies in genetic epidemiology. 'Fair access' principles and practices have been pragmatically developed that, unlike open access policies in this area, are not cumbersome but, rather, are fit for the purpose of expediting new study designs and their implementation. UDBN has so far distributed >60,000 samples for major genotyping studies yielding >10 billion genotypes. It provides a working model that can inform progress in biobanking nationally, across Europe and internationally.
Pubmed ID: 19672698 RIS Download
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Web service for permanent archiving and sharing of all types of personally identifiable genetic and phenotypic data resulting from biomedical research projects. The repository allows you to explore datasets from numerous genotype experiments, supplied by a range of data providers. The EGA''s role is to provide secure access to the data that otherwise could not be distributed to the research community. The EGA contains exclusive data collected from individuals whose consent agreements authorize data release only for specific research use or to bona fide researchers. Strict protocols govern how information is managed, stored and distributed by the EGA project. As an example, only members of the EGA team are allowed to process data in a secure computing facility. Once processed, all data are encrypted for dissemination and the encryption keys are delivered offline. The EGA also supports data access only for the consortium members prior to publication.
View all literature mentionsTHIS 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.
View all literature mentionsThe SciCrunch Infrastructure was developed as a cooperative data platform to be used by diverse communities in making data more FAIR.
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