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Found 43 result(s)

B2SAFE

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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

BIH / Charité Virtual Research Environment

Berlin Institute of Health / Charité Virtual Research Environment

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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.

Born in Bradford

BiB

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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.

Canadia Blood Services Data4Research Program

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Through its Blood4Research Program based in Vancouver, the Centre for Innovation collects blood from committed donors who have been deferred from donating blood for patient use. The collected blood is processed and provided to investigators to facilitate research that promotes advances in the fields of transfusion, cellular therapies, and transplantation medicine. Through its Cord Blood for Research Program, Canadian Blood Services’ Cord Blood Bank provides investigators with cord blood products to facilitate research that promotes advances in the fields of transfusion, cellular therapies, and transplantation medicine.​ The Cord Blood for Research Program distributes cord blood products that do not meet the criteria for storage in the cord blood bank but still contain enough cells for meaningful research and for which mothers’ research consent has been obtained.

CaPSURE

Cancer of the Prostate Strategic Urologic Research Endeavor

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CaPSURE™ is a longitudinal, observational study of approximately 15,000 men with all stages of biopsy-proven prostate cancer. Patients have enrolled at 43 community urology practices, academic medical centers, and VA hospitals throughout the United States since 1995. CEASAR stands for Comparative Effectiveness Analysis of Surgery and Radiation. The ongoing goal of CEASAR is to help learn more about what prostate cancer treatments work best, for which patients, in whose hands. There are currently about 3,600 men with a prostate cancer diagnosis participating in CEASAR. Three rounds of surveys have been completed, with the first carried out in the spring of 2010. We are currently in the process of conducting our fourth survey with the same group of men in our study. This survey, our Three Year Follow-up, will occur throughout the summer of 2014.

CardiacAI Data Repository

Cardiac Analaytics and Innovation Data Repository

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The team have established the CardiacAI Data Repository that brings large amounts of Australian healthcare data together in a secure environment with strict conditions for use of these data with an appropriate level of oversight of research activities. The CardiacAI Data Repository collects de-identified EMR data about cardiovascular patients who are admitted to a group of urban and regional hospitals in NSW and links this with state-wide hospital and emergency deparment visit and mortality data and mobile-health remote monitoring data.

Clinical data repository

CDR

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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.

Coscine

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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.

Environmental Monitoring System

EMS

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EMS is the BC Ministry of Environment's primary monitoring data repository. The system was designed to capture data covering physical/chemical and biological analyses performed on water, air, solid waste discharges and ambient monitoring sites throughout the province. It also contains related quality assurance data. Samples are collected by either ministry staff or permittees under the Environmental Management Act and then analyzed in public or private sector laboratories. The majority of such monitoring data is entered into EMS electronically via Electronic Data Transfer (EDT). EMS data is typically available in formatted hard copy reports or electronically in comma delimited (e.g., .csv) files as: Monitoring location-related data, Sample and results-related data. Direct access to EMS is restricted to ministry staff, however public access is available upon request through EMS Web Reporting.

ETH Data Archive

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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/).

Experimental Lakes Area

IISD - ELA

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IISD Experimental Lakes Area is one of the world’s most influential freshwater research facilities. It features a collection of 58 small lakes and their watersheds in Northwestern Ontario, Canada, as well as a facility with accommodations and laboratories for up to 60 personnel.

Fairdata IDA Research Data Storage Service

IDA Research Data Storage Service

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Fairdata IDA is a research data storage service that provides secure storage for research data. The Fairdata services are a group of nationally developed Finnish ICT services for managing research data, especially in the later phases of the research life cycle (sharing, publishing, and preserving). Development of research data management infrastructure has been identified as an important step in enabling implementation of the FAIR principles. The Fairdata services are funded by the Finnish Ministry of Education and Culture, and developed and maintained by CSC IT Center for Science. The services consist of the following service components: IDA – Research Data Storage; Etsin – Research Data Finder; Qvain – Research Dataset Metadata Tool; Metax – Metadata Warehouse; AVAA – Dynamic Data Publishing Platform and the Digital Preservation Service for Research Data (including management and packaging). The services also provide means for applying for and granting permits to use restricted access datasets. The service is offered free of charge for its users. The services are available to the research community in accordance with the applicable usage policy. Minedu offers access to research data storage service IDA to Finnish higher education institutions, state research institutes and projects funded by the Academy of Finland. Minedu may also grant separate access or storage capacity to the service. Finnish higher education institutions and research institutes may distribute IDA storage capacity to actors within the Finnish research system, within the limits of their usage shares. The service is intended for storing research data and materials related to it. The data stored in the service is available to all project users. The users mark their data to be persistently stored (“Frozen”) in the service. All project members may make the “Frozen” data and related metadata publicly accessible by using the other aforementioned Fairdata services. The data in the service is stored in Finland. IDA service stores the data stored by organisations projects continuously or until it’s transferred to digital preservation, provided that the Terms of Use are met. The owners of the data decide on the openness and usage policies for their own data. User organisations are offered support and guidance on using the service.

Fox Insight Date Exploration Network

Fox DEN

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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.

Growing Up Today Study

GUTS

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<<<!!!<<< The 2019-2020 Questionnaire is no longer live. >>>!!!>>>

HI HOPES

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HI HOPES aims is to provide free home based support and information without bias to every family with an infant or toddler with hearing loss. Through an early intervention framework of care, support, information and partnership in a culturally sensitive, community based manner to allow we aim to empower the family in their home environment and help the baby with a hearing loss to reach her/his full potential.

InCHIANTI

The InCHIANTI Study

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<<<!!!<<< This repository is no longer available. >>>!!!>>>

Integrated Neurodegenerative Disease Database

INDD

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The Penn Integrated Neurodegenerative Disease Database (INDD) contains data from individuals with Alzheimer's disease, Parkinson's disease, frontotemporal dementia, and amyotrophic lateral sclerosis, who have been followed in research studies at the University of Pennsylvania. The database has been periodically described in publications (https://pubmed.ncbi.nlm.nih.gov/23978324/), with updates on the website. Researchers can request biosamples as well as clinical and biomarker data. Scientists work collaboratively to analyze the Integrative Neurodegenerative Disease Database (INDD) from the Center for Neurodegenerative Disease Research (CNDR) that tracks ~11,000 patients who attended one of four neurodegenerative disease centers at Penn.

LiceBase

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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.

Manitoba Population Research Data Repository

MCHP Data Repository

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The Population Health Research Data Repository housed at MCHP is a comprehensive collection of administrative, registry, survey, and other data primarily relating to residents of Manitoba. It was developed to describe and explain patterns of health care and profiles of health and illness, facilitating inter-sectoral research in areas such as health care, education, and social services.

National COVID Cohort Collaborative

National COVID Cohort Collaborative Data Enclave

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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.

National Genomic Resources Repository

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National Genomic Resources Repository is established as an institutional framework for methodical and centralized efforts to collect, generate, conserve and distribute genomic resources for agricultural research.

National Human Brain Bank for Development and Function

国家发育和功能人脑组织资源库

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National Human Brain Bank for Development and Function was originally established in 2012 by the Institute of Basic Medical Sciences, Chinese Academy of Medical Sciences as a public interest institution dedicated to the preservation and research of human brain tissues based on the volunteer donor station of Peking Union Medical College. In 2019, it was officially recognised by the Ministry of Science and Technology as a national science and technology resource platform: National Human Brain Bank for Development and Function. Since its establishment, the Concordia Brain Bank has accepted and preserved more than two hundred and seventy whole brain tissue samples. While conducting its own research on the standardisation of brain banks, neuropathology and various histologies related to human brain ageing and dementia, it has also developed and published the Standardised Operational Protocol for Human Brain Tissue Banks in China for more than ten universities in China, and has provided valuable human brain tissue samples for a number of research groups in our own institutions and other units in China, which has strongly supported brain science and brain disease research in China. As a national resource platform, we will continue to aim to support and lead brain science research in China and make positive contributions to maintaining brain health and defeating brain diseases.

National Trauma Data Bank

NTDB

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The National Trauma Data Bank® (NTDB) is the largest aggregation of trauma registry data ever assembled. The goal of the NTDB is to inform the medical community, the public, and decision makers about a wide variety of issues that characterize the current state of care for injured persons. Registry data that is collected from the NTDB is compiled annually and disseminated in the forms of hospital benchmark reports, data quality reports, and research data sets. Research data sets that can be used by researchers. To gain access to NTDB data, researchers must submit requests through our online application process

NB Institute for Research, Data and Training

NB-IRDT

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NB-IRDT is expanding research potential through pseudonymised, linkable data sets. Our repository includes a growing collection to meet diverse research needs. We only host pseudonymous data in the NB-IRDT repository. NB-IRDT also offers public use data sets, which consist of de-identified data that is publicly accessible. All our data can be accessed in the NB-IRDT lab spaces.

NBIS DOI repository

BILS DOI Repository (formerly)

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<<<!!!<<< The repository is inactive, please use SciLifeLab Data Repository https://www.re3data.org/repository/r3d100013347 >>>!!!>>>