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Found 32 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 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.
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.
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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.
The PAIN Repository is a recently funded NIH initiative, which has two components: an archive for already collected imaging data (Archived Repository), and a repository for structural and functional brain images and metadata acquired prospectively using standardized acquisition parameters (Standardized Repository) in healthy control subjects and patients with different types of chronic pain. The PAIN Repository provides the infrastructure for storage of standardized resting state functional, diffusion tensor imaging and structural brain imaging data and associated biological, physiological and behavioral metadata from multiple scanning sites, and provides tools to facilitate analysis of the resulting comprehensive data sets.
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.
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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.
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 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.
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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.
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.
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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.
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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.
In 2003, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at NIH established Data, Biosample, and Genetic Repositories to increase the impact of current and previously funded NIDDK studies by making their data and biospecimens available to the broader scientific community. These Repositories enable scientists not involved in the original study to test new hypotheses without any new data or biospecimen collection, and they provide the opportunity to pool data across several studies to increase the power of statistical analyses. In addition, most NIDDK-funded studies are collecting genetic biospecimens and carrying out high-throughput genotyping making it possible for other scientists to use Repository resources to match genotypes to phenotypes and to perform informative genetic analyses.
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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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.
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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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.
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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.
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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.
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The Cross-National Time-Series Data Archive (CNTS) was initiated by Arthur S. Banks in 1968 with the aim of assembling, in machine readable, longitudinal format, certain of the aggregate data resources of The Statesman’s Yearbook. The CNTS offers a listing of international and national country-data facts. The dataset contains statistical information on a range of countries, with data entries ranging from 1815 to the present.