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Found 16 result(s)
Subject(s)
Content type(s)
Country
THIN is a medical data collection scheme that collects anonymised patient data from its members through the healthcare software Vision. The UK Primary Care database contains longitudinal patient records for approximately 6% of the UK Population. The anonymised data collection, which goes back to 1994, is nationally representative of the UK population.
Subject(s)
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The UMIN case data repository system was implemented by adding a function to the UMIN Clinical Trials Registry System. The aim of this system is to keep anonymized case data from clinical research conducted by individual researchers at the UMIN center, and to guarantee the content of the data to third parties. This system enables other researchers to inspect case data or to repeat statistical analyses
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Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)’ is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors. Researchers from the Netherlands Comprehensive Cancer Centre and Tilburg University in Tilburg, The Netherlands, work together with medical specialists from national hospitals in order to setup different PROFILES studies, collect the necessary data, and present the results in scientific journals and (inter)national conferences.
Subject(s)
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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).
Subject(s)
Country
The FREEBIRD website aims to facilitate data sharing in the area of injury and emergency research in a timely and responsible manner. It has been launched by providing open access to anonymised data on over 30,000 injured patients (the CRASH-1 and CRASH-2 trials).
Subject(s)
Content type(s)
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The NCI's Genomic Data Commons (GDC) provides the cancer research community with a unified data repository that enables data sharing across cancer genomic studies in support of precision medicine.
The GDC obtains validated datasets from NCI programs in which the strategies for tissue collection couples quantity with high quality.
Tools are provided to guide data submissions by researchers and institutions.
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TCIA is a service which de-identifies and hosts a large archive of medical images of cancer accessible for public download. The data are organized as “collections”; typically patients’ imaging related by a common disease (e.g. lung cancer), image modality or type (MRI, CT, digital histopathology, etc) or research focus. Supporting data related to the images such as patient outcomes, treatment details, genomics and expert analyses are also provided when available.
Subject(s)
Content type(s)
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The European Genome-phenome Archive (EGA) is designed to be a repository for all types of sequence and genotype experiments, including case-control, population, and family studies. We will include SNP and CNV genotypes from array based methods and genotyping done with re-sequencing methods.
The EGA will serve as a permanent archive that will archive several levels of data including the raw data (which could, for example, be re-analysed in the future by other algorithms) as well as the genotype calls provided by the submitters. We are developing data mining and access tools for the database.
For controlled access data, the EGA will provide the necessary security required to control access, and maintain patient confidentiality, while providing access to those researchers and clinicians authorised to view the data. In all cases, data access decisions will be made by the appropriate data access-granting organisation (DAO) and not by the EGA. The DAO will normally be the same organisation that approved and monitored the initial study protocol or a designate of this approving organisation. The European Genome-phenome Archive (EGA) allows you to explore datasets from genomic studies, provided by a range of data providers. Access to datasets must be approved by the specified Data Access Committee (DAC).
Subject(s)
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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.
Content type(s)
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The nationally recognized National Cancer Database (NCDB)—jointly sponsored by the American College of Surgeons and the American Cancer Society—is a clinical oncology database sourced from hospital registry data that are collected in more than 1,500 Commission on Cancer (CoC)-accredited facilities. NCDB data are used to analyze and track patients with malignant neoplastic diseases, their treatments, and outcomes. Data represent more than 70 percent of newly diagnosed cancer cases nationwide and more than 34 million historical records.
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>>>!!!<<< Noticed 26.08.2020: The NCI CBIIT instance of the CGAP no longer exist on this website. The Mitelman Database of Chromosome Aberrations and Gene Fusions in Cancer has a new home at the NCI-funded Institute for Systems Biology Cancer Genomics Cloud available at the following location: https://mitelmandatabase.isb-cgc.org >>>!!!<<<
Content type(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.
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Project Achilles is a systematic effort aimed at identifying and cataloging genetic vulnerabilities across hundreds of genomically characterized cancer cell lines. The project uses genome-wide genetic perturbation reagents (shRNAs or Cas9/sgRNAs) to silence or knock-out individual genes and identify those genes that affect cell survival. Large-scale functional screening of cancer cell lines provides a complementary approach to those studies that aim to characterize the molecular alterations (e.g. mutations, copy number alterations) of primary tumors, such as The Cancer Genome Atlas (TCGA). The overall goal of the project is to identify cancer genetic dependencies and link them to molecular characteristics in order to prioritize targets for therapeutic development and identify the patient population that might benefit from such targets.
Project Achilles data is hosted on the Cancer Dependency Map Portal (DepMap) where it has been harmonized with our genomics and cellular models data. You can access the latest and all past datasets here: https://depmap.org/portal/download/all/
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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.
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<<<!!!<<<no longer avialable>>>!!!>>>
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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.
- Current projects
- EOSC FAIR-IMPACT
- re3data COREF
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- Cite this service: re3data.org - Registry of Research Data Repositories. https://doi.org/10.17616/R3D last accessed: 2024-05-13
