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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).
!!! >>> integrated in https://www.re3data.org/repository/r3d100012653 <<< !!! The National Database for Clinical Trials Related to Mental Illness (NDCT) is an informatics platform for the sharing of human subjects data from all clinical trials funded by the National Institute of Mental Health (NIMH).
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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
The CPTAC Data Portal is the centralized repository for the dissemination of proteomic data collected by the Proteome Characterization Centers (PCCs) for the CPTAC program. The portal also hosts analyses of the mass spectrometry data (mapping of spectra to peptide sequences and protein identification) from the PCCs and from a CPTAC-sponsored common data analysis pipeline (CDAP).
Project Data Sphere, LLC, operates a free digital library-laboratory where the research community can broadly share, integrate and analyze historical, de-identified, patient-level data from academic and industry cancer Phase II-III clinical trials. These patient-level datasets are available through the Project Data Sphere platform to researchers affiliated with life science companies, hospitals and institutions, as well as independent researchers, at no cost and without requiring a research proposal.
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Goal of the RDC at ZPID is the documentation and long-term archiving of research data from all areas of psychology and the social sciences in accordance with the FAIR principles, using specially created metadata and to provide use of the data for scientific purposes such as secondary analysis and reanalysis. The RDC at ZPID contains all areas of psychology, in particular data sets from clinical, developmental, educational, gero-, and work and organizational psychology stemming from longitudinal studies, major surveys, and test development.
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.
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.
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 Pennington/Louisiana NORC Biorepository is a collection of de-identified data from studies of human subjects conducted at Pennington Biomedical Research Center since 1980. The repository includes data from trials centered around obesity and nutrition and those funded by the National Institutes of Health, Department of Defense, United States Department of Agriculture, American Heart Association, American Diabetes Association and other government and non-profit organizations.
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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.
CPES provides access to information that relates to mental disorders among the general population. Its primary goal is to collect data about the prevalence of mental disorders and their treatments in adult populations in the United States. It also allows for research related to cultural and ethnic influences on mental health. CPES combines the data collected in three different nationally representative surveys (National Comorbidity Survey Replication, National Survey of American Life, National Latino and Asian American Study).
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 Immunology Database and Analysis Portal (ImmPort) archives clinical study and trial data generated by NIAID/DAIT-funded investigators. Data types housed in ImmPort include subject assessments i.e., medical history, concomitant medications and adverse events as well as mechanistic assay data such as flow cytometry, ELISA, ELISPOT, etc. --- You won't need an ImmPort account to search for compelling studies, peruse study demographics, interventions and mechanistic assays. But why stop there? What you really want to do is download the study, look at each experiment in detail including individual ELISA results and flow cytometry files. Perhaps you want to take those flow cytometry files for a test drive using FLOCK in the ImmPort flow cytometry module. To download all that interesting data you will need to register for ImmPort access.
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Contains data on patients who have been tested for COVID-19 (whether positive or negative) in participating health institutions in Brazil. This initiative makes available three kinds of pseudonymized data: demographics (gender, year of birth, and region of residency), clinical and laboratory exams. Additional hospitalization information - such as data on transfers and outcomes - is provided when available. Clinical, lab, and hospitalization information is not limited to COVID-19 data, but covers all health events for these individuals, starting November 1st 2019, to allow for comorbidity studies. Data are deposited periodically, so that health information for a given individual is continuously updated to time of new version upload.
<<<!!!<<< The repository is no longer available - Data previously on the site are now available at ftp://ftp.ncbi.nlm.nih.gov/pub/mhc/mhc/Final Archive. >>>!!!>>> The dbMHC database provides an open, publicly accessible platform for DNA and clinical data related to the human Major Histocompatibility Complex (MHC). The dbMHC provides access to human leukocyte antigen (HLA) sequences, HLA allele and haplotype frequencies, and clinical datasets.
The human pluripotent stem cell registry (hPSCreg) is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name (identifier) for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application.
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Androgen Receptor Gene Mutations Database is for all who are interested in mutations of the Androgen Receptor Gene. In light of the difficulty in getting new AR mutations published the curator will now accept new mutations that have not been published, provided that it is from a reputable research or clinical laboratory. The curator also strongly suggests that where possible, particularly in the case of new unique mutations that an attempt be made to at least confirm the pathogenicity of the putatative mutation, by showing that the mutation when transfected into a suitable expression system produces a mutant androgen receptor protein.
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One of the world’s largest banks of biological, psychosocial and clinical data on people suffering from mental health problems. The Signature center systematically collects biological, psychosocial and clinical indicators from patients admitted to the psychiatric emergency and at four points throughout their journey in the hospital: upon arrival to the emergency room (state of crisis), at the end of their hospital stay, as well as at the beginning and the end of outpatient treatment. For all hospital clients who agree to participate, blood specimens are collected for the purpose of measuring metabolic, genetic, toxic and infectious biomarkers, while saliva samples are collected to measure sex hormones and hair samples are collected to measure stress hormones. Questionnaire has been selected to cover important dimensional aspects of mental illness such as Behaviour and Cognition (Psychosis, Depression, Anxiety, Impulsiveness, Aggression, Suicide, Addiction, Sleep),Socio-demographic Profile (Spiritual beliefs, Social functioning, Childhood experiences, Demographic, Family background) and Medical Data (Medication, Diagnosis, Long-term health, RAMQ data). On 2016, May there are more than 1150 participants and 400 for the longitudinal Follow-Up
The Africa Health Research Institute (AHRI) has published its updated analytical datasets for 2016. The datasets cover socio-economic, education and employment information for individuals and households in AHRI’s population research area in rural northern KwaZulu-Natal. The datasets also include details on the migration patterns of the individuals and households who migrated into and out of the surveillance area as well as data on probable causes of death for individuals who passed away. Data collection for the 2016 individual interviews – which involves a dried blood spot sample being taken – is still in progress, and therefore datasets on HIV status and General Health only go up to 2015 for now. Over the past 16 years researchers have developed an extensive longitudinal database of demographic, social, economic, clinical and laboratory information about people over the age of 15 living in the AHRI population research area. During this time researchers have followed more than 160 000 people, of which 92 000 are still in the programme.
We are a leading international centre for genomics and bioinformatics research. Our mandate is to advance knowledge about cancer and other diseases, to improve human health through disease prevention, diagnosis and therapeutic approaches, and to realize the social and economic benefits of genomics research.
With the creation of the Metabolomics Data Repository managed by Data Repository and Coordination Center (DRCC), the NIH acknowledges the importance of data sharing for metabolomics. Metabolomics represents the systematic study of low molecular weight molecules found in a biological sample, providing a "snapshot" of the current and actual state of the cell or organism at a specific point in time. Thus, the metabolome represents the functional activity of biological systems. As with other ‘omics’, metabolites are conserved across animals, plants and microbial species, facilitating the extrapolation of research findings in laboratory animals to humans. Common technologies for measuring the metabolome include mass spectrometry (MS) and nuclear magnetic resonance spectroscopy (NMR), which can measure hundreds to thousands of unique chemical entities. Data sharing in metabolomics will include primary raw data and the biological and analytical meta-data necessary to interpret these data. Through cooperation between investigators, metabolomics laboratories and data coordinating centers, these data sets should provide a rich resource for the research community to enhance preclinical, clinical and translational research.
A community platform to Share Data, Publish Data with a DOI, and get Citations. Advancing Spinal Cord Injury research through sharing of data from basic and clinical research.