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Found 132 result(s)
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The YODA Project is an effort by a group of academically-based clinical researchers to facilitate access to participant-level clinical research data and/or comprehensive reports of clinical research, such as full Clinical Study Reports (CSRs), a level of detail not customarily found in journal publications, with the aim of promoting scientific research that may advance science or lead to improvements in individual and public health and healthcare delivery. The YODA Project is guided by the following core principles, which reflect the overall mission of the project to promote open science by:
Promoting the sharing of clinical research data to advance science and improve public health and healthcare,
Promoting the responsible conduct of research,
Ensuring good stewardship of clinical research data, and
Protecting the rights of research participants
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An Open Science resource that promotes scientific research and discovery in neurological diseases and accelerates the development of new treatments. It includes a growing collection of biospecimens, longitudinal clinical and neuropsychiatric information, imaging and genetic data from patients with neurological disease as well as healthy controls.
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!!! >>> 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 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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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.
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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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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)
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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).
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The mission of ChiCTR is to “unite clinicians, clinical epidemiologists, biostatisticians, epidemiologists and healthcare managers both at home and abroad, to manage clinical trials in a strict and scientific manner, and to promote their quality in China, so as to provide reliable evidence from clinical trials for health care workers, consumers and medical policy decision makers, and also to use medical resources more effectively to provide better service for Chinese people and all human beings.
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The European Union Clinical Trials Register allows you to search for protocol and results information on interventional clinical trials that are conducted in the European Union (EU) and the European Economic Area (EEA) and clinical trials conducted outside the EU / EEA that are linked to European paediatric-medicine development. The EU Clinical Trials Register is part of EudraPharm, which is the community database of authorised medicinal products. The website provides public access to information extracted from the European Union Drug Regulating Authorities Clinical Trials Database, EudraCT.
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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 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).
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The MDR harvests metadata on data objects from a variety of sources within clinical research (e.g. trial registries, data repositories) and brings that together in a single searchable portal. The metadata is concerned with discoverability, access and provenance of the data objects (which because the data may be sensitive will often be available under a controlled access regime). At the moment (01/2021) the MDR obtains study data from: Clinical Trials.gov (CTG), The European Clinical Trials Registry (EUCTR), ISRCTN, The WHO ICTRP
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ClinicalTrials.gov is a website and online database of clinical research studies and information about their results. The purpose of ClinicalTrials.gov is to provide information about clinical research studies to the public, researchers, and health care professionals. The U.S. government does not review or approve the safety and science of all studies listed on this website.
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The eyeGENE® Research Resource is open for approved research studies. Application details here Researchers and clinicians are actively developing gene-based therapies to treat ophthalmic genetic diseases that were once considered untreatable.
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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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BioLINCC is the Biologic Specimen and Data Repository Coordinating Center. The center coordinates data and biospecimens from NHLBI-funded studies that are available for use in other approved studies. The center also creates teaching data sets from NHLBI-funded studies for use in training future biostatisticians.
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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.
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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.
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The PRO-ACT platform houses the largest ALS clinical trials dataset ever created. It is a powerful tool for biomedical researchers, statisticians, clinicians, or anyone else interested in "Big Data." PRO-ACT merges data from existing public and private clinical trials, generating an invaluable resource for the design of future ALS clinical trials. The database will also contribute to the identification of unique observations, novel correlations, and patterns of ALS disease progression, as well as a variety of still unconsidered analyses. More than 600,000 people around them world are battling ALS. The disease strikes indiscriminately, and typically patients will die within 2-5 years following diagnosis. Currently, there are no effective treatments or a cure for ALS. Users of PRO-ACT are helping to accelerate the discovery, development, and delivery of ALS treatments, which will provide hope to patients and their families.
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Clinical Genomic Database (CGD) is a manually curated database of conditions with known genetic causes, focusing on medically significant genetic data with available interventions.
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Novartis provides the technical results and trial summaries for patients from Phase 1 through 4 interventional trials for innovative products within one year of trial completion. A trial summary for patients is a trial result written in easier to understand language than the technical results.
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<<<!!!<<< As stated 2017-05-23 Cancer GEnome Mine is no longer available >>>!!!>>>
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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.
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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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- 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: 2024-10-05
