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Found 17 result(s)
The data in the U of M’s Clinical Data Repository comes from the electronic health records (EHRs) of more than 2 million patients seen at 8 hospitals and more than 40 clinics. For each patient, data is available regarding the patient's demographics (age, gender, language, etc.), medical history, problem list, allergies, immunizations, outpatient vitals, diagnoses, procedures, medications, lab tests, visit locations, providers, provider specialties, and more.
Fox DEN provides investigators with a tool to explore, download and apply statistical models on aggregated data collected for the Fox Insight online clinical study. The Fox Insight study collects patient-reported outcomes and genetic data from people with Parkinson's disease and their loved ones.
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.
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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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CINES is the French national long-term preservation service provider for Higher Education and Research: more than 20 institutions (universities, librairies, labs) archive their digital heritage at CINES so that it's preserved over time in a secure, dedicated environment. This includes documents such as PhD theses or publications, digitized ancient/rare books, satellite imagery, 3D/vidéos/image galleries, datasets, etc.
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.
The Twenty-07 Study was set up in 1986 in order to investigate the reasons for differences in health by socio-economic circumstances, gender, area of residence, age, ethnic group, and family type. 4510 people are being followed for 20 years. The initial wave of data collection took place in 1987/8, when respondents were aged 15, 35 and 55. The final wave of data collection took place in 2007/08 when respondents were aged 35, 55 and 75. In this way the Twenty-07 Study provides us with unique opportunities to investigate both the changes in people's lives over 20 years and how they affect their health, and the differences in people's experiences at the same ages 20 years apart, and how these have different effects on their health.
Born in Bradford is one of the biggest and most important medical research studies undertaken in the UK. The project started in 2007 and is looking to answer questions about our health by tracking the lives of 13,500 babies and their families and will provide information for studies across the UK and around the world. The aim of Born in Bradford is to find out more about the causes of childhood illness by studying children from all cultures and backgrounds as their lives unfold.
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Sikt archives research data on people and society to make sure the data can be shared and is made available for reuse. We continuously enrich our data collections to provide a richer basis for research. Sikt’s main focus is quantitative data matrices on individuals, organisations, administrative, political, and geographical actors. The archive specialise in survey data, which undergoes extensive curation at the variable level and detailed metadata is produced and published in Norwegian and English.
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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sciencedata.dk is a research data store provided by DTU, the Danish Technical University, specifically aimed at researchers and scientists at Danish academic institutions. The service is intended for working with and sharing active research data as well as for safekeeping of large datasets. The data can be accessed and manipulated via a web interface, synchronization clients, file transfer clients or the command line. The service is built on and with open-source software from the ground up: FreeBSD, ZFS, Apache, PHP, ownCloud/Nextcloud. DTU is actively engaged in community efforts on developing research-specific functionality for data stores. Our servers are attached directly to the 10-Gigabit backbone of "Forskningsnettet" (the National Research and Education Network of Denmark) - implying that up and download speed from Danish academic institutions is in principle comparable to those of an external USB hard drive. Data store for research data allowing private sharing and sharing via links / persistent URLs.
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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.
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WHIP is a database of individual work histories, based on Inps administrative archives. The reference population is made up by all the people – Italian and foreign – who have worked in Italy even only for only a part of their working career. A large representative sample has been extracted from this population: in the standard file the sampling coefficient is about 1: 180, for a dynamic population of about 370,000 people (figures will be doubled in the full edition). For each of these people the main episodes of their working careers are observed. The complete list of observations includes: private employee working contracts, atypical contracts, self-employment activities as artisan, trader and some activities as freelancer, retirement spells, as well as non-working spells in which the individual received social benefits, like unemployment subsidies or mobility benefits. The workers for whom activity is not observed in WHIP are those who worked in the public sector or as freelancers (lawyers or notaries) – who have an autonomous security fund. The WHIP section concerning employee contracts is a Linked Employer Employee Database: in addition to the data about the contract, thanks to a linkage with the Inps Firm Observatory, data concerning the firm in which the worker is employed is also available.
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
The Swiss HIV Cohort Study (SHCS), established in 1988, is a systematic longitudinal study enrolling HIV-infected individuals in Switzerland. It is a collaboration of all Swiss University Hospital infectious disease outpatient clinics, two large cantonal hospitals, all with affiliated laboratories, and with affiliated smaller hospitals and private physicians carrying for HIV patients. The Swiss Mother and Child HIV Cohort Study (MoCHiV) is integrated into the SHCS. It aims at preventing mother to child transmission and enrolls HIV-infected pregnant women and their children. The SHCS involves practically all researchers being active in patient-oriented HIV research in Switzerland. The clinics can delegate recruitment of participants and follow-up visits to other outpatient clinics or to specialized private physicians, provided that the requirements of the protocol can be entirely fulfilled and controlled. The laboratories can contract other laboratories for some of the analyses.