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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)
NIAID’s TB Portals Program is a multi-national collaboration for TB data sharing and analysis to advance TB research. As a global consortium of clinicians, scientists, and IT professionals from 40 sites in 16 countries throughout eastern Europe, Asia, and sub-Saharan Africa, the TB Portals Program is a web-based, open-access repository of multi-domain TB data and tools for its analysis. Researchers can find linked socioeconomic/geographic, clinical, laboratory, radiological, and genomic data from over 7,500 international published TB patient cases with an emphasis on drug-resistant tuberculosis.
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 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 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).
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The global scientific community, international partners, the private sector, civil society, and other relevant stakeholders establish a voluntary platform to link clinical trials registers in order to ensure a single point of access and the unambiguous identification of trials with a view to enhancing access to information by patients, families, patient groups and others.
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.
>>>!!!<<< 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 >>>!!!<<<
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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 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.