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Found 60 result(s)
Content type(s)
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 Maelstrom Catalogue provides a user-friendly solution for data discovery. It contains comprehensive information about epidemiological research networks and studies, and the data they have collected. It also provides information about harmonized data generated by these research networks.
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The ICES Data Repository consists of record-level, coded and linkable health data sets. It encompasses much of the publicly funded administrative health services records for the Ontario population eligible for universal health coverage since 1986 and is capable of integrating research-specific data, registries and surveys. Currently, the repository includes health service records for as many as 13 million people. Files in the ICES Data Repository are described in the Data Dictionary. This includes ICES General Use Data, as well as ICES Controlled Use Data. Datasets obtained by ICES for specific project(s) (project-specific data) are not described in the Data Dictionary. The ICES Data Dictionary is an essential resource for anyone doing research at ICES. The information in this Data Dictionary is almost entirely based on the metadata belonging to the datasets described.
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The Data Access Support Hub (DASH) is a one-stop data access service portal for researchers requiring multi-regional data in Canada. DASH services are provided by a multi-centre coordination team from various provincial/territorial data centres and pan-Canadian organizations, including the Canadian Institute for Health Information (CIHI) and Statistics Canada.
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The Canadian Longitudinal Study on Aging (CLSA) is a large, national, long-term study of more than 50,000 individuals who were between the ages of 45 and 85 when recruited. These participants will be followed until 2033 or death. The aim of the CLSA is to find ways to help us live long and live well, and understand why some people age in healthy fashion while others do not.
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The Canadian Institute for Health Information (CIHI) provides comparable and actionable data and information that are used to accelerate improvements in health care, health system performance and population health across Canada.
The overall vision for the SPARC Portal is to accelerate autonomic neuroscience research and device development by providing access to digital resources that can be shared, cited, visualized, computed, and used for virtual experimentation.
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Bioresources, often referred to as biological resources, are essential experimental research materials for life science and bioindustry. Under the three principles of “Trust”, “Sustainability” and “Leadership”, RIKEN BRC is committed to receiving deposition/donation of bioresources from the research community, confirming the authenticity of bioresources by rigorous quality examination, preserving, and distributing them back to the research community. f you wish to search quickly or to search multiple bioresources (mouse, cell, plant, microorganism, gene) simultaneously, we recommend to search from the Top Page. At the Top page, bioresource search and Google-based site search are available.
NeuGRID is a secure data archiving and HPC processing system. The neuGRID platform uses a robust infrastructure to provide researchers with a simple interface for analysing, searching, retrieving and disseminating their biomedical data. With hundreds of investigators across the globe and more than 10 million of downloadable attributes, neuGRID aims to become a widespread resource for brain analyses. NeuGRID platform guarantees reliability with a fault-tolerant network to prevent system failure.
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The German Central Health Study Hub is a platform that serves two different kinds of users. First, it allows scientists and data holding organizations (data producers) to publish their project characteristics, documents and data related to their research endeavour in a FAIR manner. Obviously, patient-level data cannot be shared publicly, however, metadata describing the patient-level data along with information about data access can be shared via the platform (preservation description information). The other kind of user is a scientist or researcher (data consumer) that likes to find information about past and ongoing studies and is interested in reusing existing patient-level data for their project. To summarize, the platforms connect data providers with data consumers in the domain of clinical, public health and epidemiologic health research to foster reuse. The platform aggregates and harmonizes information already entered in various public repositories such as DRKS, clinicaltrials.gov, WHO ICTRP to provide a holistic view of the German research landscape in the aforementioned research areas. In addition, data stewards actively collect available information from (public) resources such as websites that cannot be automatically integrated. The service started during the COVID-19 pandemic.
The Health Data Research Innovation Gateway (the ‘Gateway’) provides a common entry point to discover and enquire about access to UK health datasets for research and innovation. It provides detailed information about the datasets, which are held by members of the UK Health Data Research Alliance, such as a description, size of the population, and the legal basis for access. The Gateway includes the ability to search for research projects, publications and health data tools, such as those related to COVID-19. New interactive features provide a community forum for researchers to collaborate and connect and the ability to add research projects. The Innovation Gateway does not hold or store any datasets or patient or health data but rather acts as a portal to allow discovery of datasets and to request access to them for health research. A dataset is a collection of related individual pieces of data but in the case of health data, identifiable information (e.g. name or NHS number) is removed and data is de-identified where possible. When you access the Gateway you will not be able to view or extract the data itself. Instead, you will be able to see information that describes what the different datasets are (e.g. where the dataset has come from, a description of the dataset, the time period and the geographical areas the dataset covers).
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 Infectious Diseases Data Observatory (IDDO) assembles clinical, laboratory and epidemiological data on a collaborative platform to be shared with the research and humanitarian communities. The data are analysed to generate reliable evidence and innovative resources that enable research-driven responses to the major challenges of emerging and neglected infections. Access is available to individual patient data held for malaria and Ebola virus disease. Resources for visceral leishmaniasis, schistosomiasis and soil transmitted helminths, Chagas disease and COVID-19 are under development. IDDO contains the following repositories : COVID-19 Data Platform, Chagas Data Platform, Schistosomiasis & Soil Transmitted Helminths Data Platform, Visceral Leishmaniasis Data Platform, Ebola Data Platform, WorldWide Antimalarial Resistance Network (WWARN)
The ISRCTN registry is a primary clinical trial registry recognised by WHO and ICMJE that accepts all clinical research studies (whether proposed, ongoing or completed), providing content validation and curation and the unique identification number necessary for publication. All study records in the database are freely accessible and searchable. ISRCTN supports transparency in clinical research, helps reduce selective reporting of results and ensures an unbiased and complete evidence base. ISRCTN accepts all studies involving human subjects or populations with outcome measures assessing effects on human health and well-being, including studies in healthcare, social care, education, workplace safety and economic development.
LONI’s Image and Data Archive (IDA) is a secure data archiving system. The IDA uses a robust infrastructure to provide researchers with a flexible and simple interface for de-identifying, searching, retrieving, converting, and disseminating their biomedical data. With thousands of investigators across the globe and more than 21 million data downloads to data, the IDA guarantees reliability with a fault-tolerant network comprising multiple switches, routers, and Internet connections to prevent system failure.
Vivli is a non-profit organization working to advance human health through the insights and discoveries gained by sharing and analyzing data. It is home to an independent global data-sharing and analytics platform which serves all elements of the international research community. The platform includes a data repository, in-depth search engine and cloud-based analytics, and harmonizes governance, policy and processes to make sharing data easier. Vivli acts as a neutral broker between data contributor and data user and the wider data sharing community.
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The Japanese Genotype-phenotype Archive (JGA) is a service for permanent archiving and sharing of all types of individual-level genetic and de-identified phenotypic data resulting from biomedical research projects. The JGA contains exclusive data collected from individuals whose consent agreements authorize data release only for specific research use or to bona fide researchers. Strict protocols govern how information is managed, stored and distributed by the JGA. Once processed, all data are encrypted. Users can contact the JGA team from here. JGA services are provided in collaboration with National Bioscience Database Center (NBDC) of Japan Science and Technology Agency.
The National Institute of Mental Health Data Archive (NDA) makes available human subjects data collected from hundreds of research projects across many scientific domains. The NDA provides infrastructure for sharing research data, tools, methods, and analyses enabling collaborative science and discovery. De-identified human subjects data, harmonized to a common standard, are available to qualified researchers. Summary data is available to all. The primary point of entry to the NDA is currently through the National Database for Autism Research (NDAR) website, which serves the autism research community. All NDA repositories can be accessed through this website for data contribution and querying with other scientific communities, allowing for aggregation and secondary analysis of data.
The Research Collection is ETH Zurich's publication platform. It unites the functions of a university bibliography, an open access repository and a research data repository within one platform. Researchers who are affiliated with ETH Zurich, the Swiss Federal Institute of Technology, may deposit research data from all domains. They can publish data as a standalone publication, publish it as supplementary material for an article, dissertation or another text, share it with colleagues or a research group, or deposit it for archiving purposes. Research-data-specific features include flexible access rights settings, DOI registration and a DOI preview workflow, content previews for zip- and tar-containers, as well as download statistics and altmetrics for published data. All data uploaded to the Research Collection are also transferred to the ETH Data Archive, ETH Zurich’s long-term archive.
The mission of NCHS is to provide statistical information that will guide actions and policies to improve the health of the American people. As the Nation's principal health statistics agency, NCHS is responsible for collecting accurate, relevant, and timely data. NCHS' mission, and those of its counterparts in the Federal statistics system, focuses on the collection, analysis, and dissemination of information that is of use to a broad range of us.
NASA Life Sciences Portal is the next generation of the Life Sciences Data Archive for Human, Animal and Plant Research NASA's Human Research Program (HRP) conducts research and develops technologies that allow humans to travel safely and productively in space. The Program uses evidence from data collected on astronauts, as well as other supporting studies. These data are stored in the research data repository, Life Sciences Data Archive (LSDA).
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BioGrid Australia Limited operates a federated data sharing platform for collaborative translational health and medical research providing a secure infrastructure that advances health research by linking privacy-protected and ethically approved data among a wide network of health collaborators. BioGrid links real-time de-identified health data across institutions, jurisdictions and diseases to assist researchers and clinicians improve their research and clinical outcomes. The web-based infrastructure provides ethical access while protecting both privacy and intellectual property.
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The Human Genetic Variation Database (HGVD) aims to provide a central resource to archive and display Japanese genetic variation and association between the variation and transcription level of genes. The database currently contains genetic variations determined by exome sequencing of 1,208 individuals and genotyping data of common variations obtained from a cohort of 3,248 individuals.
A database for plant breeders and researchers to combine, visualize, and interrogate the wealth of phenotype and genotype data generated by the Triticeae Coordinated Agricultural Project (TCAP).
RADAR service offers the ability to search for research data descriptions of the Natural Resources Institute Finland (Luke). The service includes descriptions of research data for agriculture, forestry and food sectors, game management, fisheries and environment. The public web service aims to facilitate discovering subjects of natural resources studies. In addition to Luke's research data descriptions one can search metadata of the Finnish Environment Institute (SYKE). The interface between Luke and SYKE metadata services combines Luke's research data descriptions and SYKE's descriptions of spatial datasets and data systems into a unified search service.