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Found 9 result(s)
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Human biomaterial banks (short: biobanks) are collections of human body substances (i.e. blood, DNA, urine or tissue) connected with disease specific information. This allow for research of relations between deseases and underlying (molecular) modifications and paves the way for developing target-oriented therapies ("personalized medicine"). The biobank material arises from samples taken for therapeutical or diagnostic reasons or is extracted in the context of clinical trials. An approval for usage by the patient is always needed prior to any research activities.
The Virtual Research Environment (VRE) is an open-source data management platform that enables medical researchers to store, process and share data in compliance with the European Union (EU) General Data Protection Regulation (GDPR). The VRE addresses the present lack of digital research data infrastructures fulfilling the need for (a) data protection for sensitive data, (b) capability to process complex data such as radiologic imaging, (c) flexibility for creating own processing workflows, (d) access to high performance computing. The platform promotes FAIR data principles and reduces barriers to biomedical research and innovation. The VRE offers a web portal with graphical and command-line interfaces, segregated data zones and organizational measures for lawful data onboarding, isolated computing environments where large teams can collaboratively process sensitive data privately, analytics workbench tools for processing, analyzing, and visualizing large datasets, automated ingestion of hospital data sources, project-specific data warehouses for structured storage and retrieval, graph databases to capture and query ontology-based metadata, provenance tracking, version control, and support for automated data extraction and indexing. The VRE is based on a modular and extendable state-of-the art cloud computing framework, a RESTful API, open developer meetings, hackathons, and comprehensive documentation for users, developers, and administrators. The VRE with its concerted technical and organizational measures can be adopted by other research communities and thus facilitates the development of a co-evolving interoperable platform ecosystem with an active research community.
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The GISAID Initiative promotes the international sharing of all influenza virus sequences, related clinical and epidemiological data associated with human viruses, and geographical as well as species-specific data associated with avian and other animal viruses, to help researchers understand how the viruses evolve, spread and potentially become pandemics. *** GISAID does so by overcoming disincentives/hurdles or restrictions, which discourage or prevented sharing of influenza data prior to formal publication. *** The Initiative ensures that open access to data in GISAID is provided free-of-charge and to everyone, provided individuals identify themselves and agree to uphold the GISAID sharing mechanism governed through its Database Access Agreement. GISAID calls on all users to agree to the basic premise of upholding scientific etiquette, by acknowledging the originating laboratories providing the specimen and the submitting laboratories who generate the sequence data, ensuring fair exploitation of results derived from the data, and that all users agree that no restrictions shall be attached to data submitted to GISAID, to promote collaboration among researchers on the basis of open sharing of data and respect for all rights and interests.
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The SHIP study´s main aims include the investigation of health in all its aspects and complexity involving the collection and assessment of data relevant to the prevalence and incidence of common, population-relevant diseases and their risk factors.
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KiGGS is a long-term study conducted by the Robert Koch Institute (RKI) on the health of children and adolescents in Germany. The study repeatedly supplies data, representative of the country as a whole, on the health of under 18-year-olds. In addition, the children and adolescents of the first KiGGS study are repeatedly invited, and they continue to be monitored right into their adulthood.
The Survey of Health, Ageing and Retirement in Europe (SHARE) is a multidisciplinary and cross-national panel database of micro data on health, socio-economic status and social and family networks of more than 140,000 individuals (approximately 530,000 interviews) aged 50 or over from 28 European countries and Israel.
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Coscine is a web-based RDM platform for all kind of generic research data that was developed at RWTH Aachen University. It enables the storage, management and archiving for ten years of research and metadata generated in the context of research projects. The platform also promotes cooperation across organizational boundaries, as researchers can log in either via their organization via SSO or via ORCID. To enable meaningful metadata management for all research areas, Coscine allows flexible description with metadata based on established technologies (SHACL/RDF). The platform is designed to make warm/used/active data FAIR.