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Found 19 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.
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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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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 New York Brain Bank (NYBB) at Columbia University was established to collect postmortem human brains to meet the needs of neuroscientists investigating specific psychiatric and neurological disorders.
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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 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.
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.
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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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.
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
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Population Data BC (PopData) is a multi-university, data and education resource facilitating interdisciplinary research on the determinants of human health, well-being and development. Providing a range of services to researchers and data providers, PopData strives to ensure that researchers have timely access to the data and training they need to address research questions on population health. Research using these data informs policy-making and leads to healthier communities.
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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.
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.