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Found 38 result(s)
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The Australian Breast Cancer Tissue Bank (ABCTB) provides data contributed by an Australian network of cancer clinicians, researchers, and patients. ABCTB privacy protection policy ensures patients' identities are not revealed and cancer researchers are the only individuals with open access to data.
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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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Patients-derived tumor xenograft (PDX) mouse models are an important oncology research platform to study tumor evolution, drug response and personalised medicine approaches.
We have expanded to organoids and cell lines and are now called CancerModels.Org
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CaPSURE™ is a longitudinal, observational study of approximately 15,000 men with all stages of biopsy-proven prostate cancer. Patients have enrolled at 43 community urology practices, academic medical centers, and VA hospitals throughout the United States since 1995.
CEASAR stands for Comparative Effectiveness Analysis of Surgery and Radiation. The ongoing goal of CEASAR is to help learn more about what prostate cancer treatments work best, for which patients, in whose hands.
There are currently about 3,600 men with a prostate cancer diagnosis participating in CEASAR. Three rounds of surveys have been completed, with the first carried out in the spring of 2010. We are currently in the process of conducting our fourth survey with the same group of men in our study. This survey, our Three Year Follow-up, will occur throughout the summer of 2014.
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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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<<<!!!<<< This repository is no longer available. >>>!!!>>>
The Diabetes Study of Northern California (DISTANCE) conducts epidemiological and health services research in diabetes among a large, multiethnic cohort of patients in a large, integrated health care delivery system.
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<<<!!!<<< This information is for reference purposes only. It was current when produced and may now be outdated. Archive material is no longer maintained, and some links may not work. Persons with disabilities having difficulty accessing this information should contact us at: https://info.ahrq.gov. Let us know the nature of the problem, the Web address of what you want, and your contact information. Please go to www.ahrq.gov for current information. >>>!!!>>>
HIV and AIDS Costs and Use is the first major research effort to collect information on a nationally representative sample of people in care for HIV infection. Also called the HIV Cost and Services Utilization Study (HCSUS), the core study is meant to help policymakers in the U.S. make informed decisions on the subject. The study describes the type of therapies available and costs of health care services for people with HIV/AIDS, as well as quality of care, social support, and non-medical services HIV/AIDS patients receive. Supplemental studies examine HIV care delivery in rural areas, prevalence of mental and substance abuse disorders, and other health issues of HIV/AIDS patients.
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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.
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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 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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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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<<<!!!<<< As of June 30, 2017, HardinMD has been retired, although it is still findable through the WayBack Machine >>>!!!>>>
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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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The Intermediate Filament Database will function as a continuously updated review of the intermediate filament field and it is hoped that users will contribute to the development and expansion of the database on a regular basis. Contributions may include novel variants, new patients with previously discovered sequence and allelic variants. Suggestions on ways to improve the database are also welcome.
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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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Surveillance Epidemiology of Coronavirus (COVID19) Under Research Exclusion is an international, pediatric and adult database to monitor and report on outcomes of COVID-19 occurring in IBD patients.
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The Evidence-based Practice Center (EPC) at Tufts Medical Center, with support from the Agency for Healthcare Research and Quality (AHRQ), has developed the Systematic Review Data Repository (SRDR), which is a Web-based tool for data extraction and storage of systematic review data. Potential users include patients, policy makers/stakeholders, independent researchers, research centers, and funders of research.
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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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The ISSAID website gathers resources related to the systemic autoinflammatory diseases in order to facilitate contacts between interested physicians and researchers.
The website provides support to share and rapidly disseminate information, thoughts, feelings and experiences to improve the quality of life of patients and families affected by systemic autoinflammatory diseases, and promote advances in the search for causes and cures.
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Candida Genome Database, a resource for genomic sequence data and gene and protein information for Candida albicans and related species. CGD is based on the Saccharomyces Genome Database. The Candida Genome Database (CGD) provides online access to genomic sequence data and manually curated functional information about genes and proteins of the human pathogen Candida albicans and related species. C. albicans is the best studied of the human fungal pathogens. It is a common commensal organism of healthy individuals, but can cause debilitating mucosal infections and life-threatening systemic infections, especially in immunocompromised patients. C. albicans also serves as a model organism for the study of other fungal pathogens.
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The COVID-19 pandemic has affected every country in the world. It is well documented that those most susceptible to the worst outcomes of COVID-19 are the immunocompromised and those with underlying comorbidities. Therefore, patients requiring treatment for COVID-19 will also be on additional medication, posing a risk for drug-drug interactions (DDIs). In order to address this, the Liverpool Drug Interactions website team developed this freely available drug interactions resource to provide information on the likelihood of interactions between the experimental agents used for the treatment of COVID-19 and commonly prescribed co-medications.
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The team have established the CardiacAI Data Repository that brings large amounts of Australian healthcare data together in a secure environment with strict conditions for use of these data with an appropriate level of oversight of research activities.
The CardiacAI Data Repository collects de-identified EMR data about cardiovascular patients who are admitted to a group of urban and regional hospitals in NSW and links this with state-wide hospital and emergency deparment visit and mortality data and mobile-health remote monitoring data.
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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 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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The Biobanque québécoise de la COVID-19 (BQC19) is a pan-provincial initiative that collects, stores and shares data and blood samples from COVID-19 patients, both severe and non-severe cases and control cases, in an effort to respond effectively to the public health challenges posed by the pandemic. BQC19 believes that better understanding the disease will help society in returning to social activities and in preparing for future pandemics. It sees access to high-quality samples and data as essential in fulfilling research and works to bring about national and international research collaborations.
- 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: 2024-04-26
