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Found 12 result(s)
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This site is dedicated to making high value health data more accessible to entrepreneurs, researchers, and policy makers in the hopes of better health outcomes for all. In a recent article, Todd Park, United States Chief Technology Officer, captured the essence of what the Health Data Initiative is all about and why our efforts here are so important.
Country
BioGrid Australia Limited operates a federated data sharing platform for collaborative translational health and medical research providing a secure infrastructure that advances health research by linking privacy-protected and ethically approved data among a wide network of health collaborators. BioGrid links real-time de-identified health data across institutions, jurisdictions and diseases to assist researchers and clinicians improve their research and clinical outcomes. The web-based infrastructure provides ethical access while protecting both privacy and intellectual property.
Content type(s)
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.
Country
The Cancer in Young People in Canada (CYP-C) surveillance program collects in-depth data concerning risk factors, health outcomes, quality and accessibility of care, and late effects among children and youth with cancer. CYP-C represents a collaboration involving the C17 Council, Canadian Partnerships Against Cancer (CPAC), Public Health Agency of Canada (PHAC), provincial and territorial cancer registries, Statistics Canada and non-governmental organizations.
Content type(s)
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
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.
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.
The Breast Cancer Surveillance Consortium (BCSC) is a research resource for studies designed to assess the delivery and quality of breast cancer screening and related patient outcomes in the United States. The BCSC is a collaborative network of seven mammography registries with linkages to tumor and/or pathology registries. The network is supported by a central Statistical Coordinating Center.
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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 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.
The NCAA Student-Athlete Experiences Data Archive provides access to data about student athletes and will grow to include a handful of user-friendly data collections related to graduation rates; team-level Academic Progress Rates in Division I; and individual-level data on the experiences of current and former student-athletes from the NCAA's Growth, Opportunities, Aspirations and Learning of Students in college study (GOALS), and the Study of College Outcomes and Recent Experiences (SCORE). In the long run, the NCAA expects to follow this initial release with the publication of as much data as possible from its archives. The data is used by college presidents, athletic personnel, faculty, student-athlete groups, media members, and researchers in looking at issues related to intercollegiate athletics and higher education.
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The eAtlas is a website, mapping system and set of data visualisation tools for presenting research data in an accessible form that promotes greater use of this information. The eAtlas will serve as the primary data and knowledge repository for all NERP Tropical Ecosystems Hub projects, which focus on the on the Great Barrier Reef, Wet Tropics rainforest and Torres Strait. The eAtlas will capture and record research outcomes and make them available to research-users in a timely, readily accessible manner. It will host meta-data records and provide an enduring repository for raw data. It will also develop and host web visualisations to view information using a simple and intuitive interface. This will assist scientists with data discovery and allow environmental managers to access and investigate research data.