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ALSPAC is a longitudinal birth cohort study which enrolled pregnant women who were resident in one of three Bristol-based health districts in the former County of Avon with an expected delivery date between 1st April 1991 and 31st December 1992. Around 14,000 pregnant women were initially recruited. Detailed information has been collected on these women, their partners and subsequent children using self-completion questionnaires, data extraction from medical notes, linkage to routine information systems and from hands-on research clinics. Additional cohorts of participants have since been enrolled in their own right including fathers, siblings, children of the children and grandparents of the children. Ethical approval for the study was obtained from the ALSPAC Ethics and Law Committee (IRB00003312) and Local Research Ethics.
B2SAFE is a robust, safe and highly available service which allows community and departmental repositories to implement data management policies on their research data across multiple administrative domains in a trustworthy manner. A solution to: provide an abstraction layer which virtualizes large-scale data resources, guard against data loss in long-term archiving and preservation, optimize access for users from different regions, bring data closer to powerful computers for compute-intensive analysis
ETH Data Archive is ETH Zurich's long-term preservation solution for digital information such as research data, digitised content, archival records, or images. It serves as the backbone of data curation and for most of its content, it is a “dark archive” without public access. In this capacity, the ETH Data Archive also archives the content of ETH Zurich’s Research Collection which is the primary repository for members of the university and the first point of contact for publication of data at ETH Zurich. All data that was produced in the context of research at the ETH Zurich, can be published and archived in the Research Collection. An automated connection to the ETH Data Archive in the background ensures the medium to long-term preservation of all publications and research data. Direct access to the ETH Data Archive is intended only for customers who need to deposit software source code within the framework of ETH transfer Software Registration. Open Source code packages and other content from legacy workflows can be accessed via ETH Library @ swisscovery (https://library.ethz.ch/en/).
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LiceBase is a database for sea lice genomics. LiceBase provides the genome annotation of the Atlantic salmon louse Lepeophtheirus salmonis, a genome browser, Blast functionality and access to related high-thoughput genomics data.
The N3C Data Enclave is a secure portal containing a very large and extensive set of harmonized COVID-19 clinical electronic health record (EHR) data. The data can be accessed through a secure cloud Enclave hosted by NCATS and cannot be downloaded due to regulatory control. Broad access is available to investigators at institutions that sign a Data Use Agreements and via Data Use Requests by investigators. The N3C is a unique open, reproducible, transparent, collaborative team science initiative to leverage sensitive clinical data to expedite COVID-19 discoveries and improve health outcomes.
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.