Data Sharing
December 16, 2022Clinical researchers, data scientists, engineers, and IT professionals at UMass Center for Clinical and Translational Science (UMCCTS) are working to create a remote-access, cloud-based system called Workspace, where researchers can safely and compliantly access their research data virtually. Steven Wong, Director of Research Informatics Systems, says, "Investigators often struggle with the
CLICThis webcast provides an overview of concepts and approaches that hubs may consider in reaching data interoperability.
To accelerate translation, researchers need access to a broad range of data from a variety of sources (electronic health records, imaging, genetics, behavioral, etc.). These sources manage and store data differently, which creates the need for standardization. The Informatics Common Metric, which is in its second year, addresses the need to harmonize data across the CTSA Program. This will enhance
The webcast provides examples of how data interoperability was used in the N3C program for the COVID-19 pandemic. The first five webcasts are an introduction to informatics, created to build foundational knowledge and to define key terms. We encourage you to watch them in order.
-University of VirginiaThis talk will present the pillars and rationale of Open Big Neuroscience, present the important characteristics of Big Biomedical Data and challenges with sharing sensitive information. The DataSifter technique for novel statistical obfuscation of sensitive will be demonstrated. Some case-studies illustrating applications to Neurodegenerative Disease, Autism Brain Imaging Data Exchange, and
January 07, 2021N3C is hosting an Open House to engage CTSA members, newcomers, and the wider translational research community. The event will be kicked off with a one-hour symposium that includes opening remarks from N3C leadership, followed by a PI/Clinician Testimonial with Dr. David Ellison of OCTRI, an N3C Tutorial on how to get involved, a demonstration of the N3C Data Enclave, and flash talks from the
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-Center for Data to Health
The N3C is the largest collection of electronic health record (EHR) data on COVID-19 patients in the world and is anchored on the OHDSI/OMOP model. This webinar will feature presentations to increase N3C awareness and engagement of nurses, and to identify opportunities and roles relevant to nurse scientists. There will also be a panel discussion involving prominent nurse scientists to address
November 10, 2020Regenstrief Institute, Indiana Clinical and Translational Sciences Institute (CTSI) and Datavant are supporting the National Institutes of Health (NIH) in a national effort to securely gather data to help scientists understand and develop treatments for COVID-19. The National COVID Cohort Collaborative (N3C) was launched as a centralized analytics platform to store and study vast amounts of-
November 06, 2020Built and launched in just a few short months, the National COVID Cohort Collaborative (N3C) was established with researchers from more than 300 institutions. Whether you’re a clinician, statistician, data scientist, or translational scientist of any kind, there are numerous ways to participate. The N3C Data Enclave opened on September 2nd and now has over 1 million patient records (over 1 billion
The National COVID Cohort Collaborative (N3C): A National Data Sharing Partnership to Fight COVID-19
Center for Data to HealthBackground: America’s grim COVID-19 statistics tell a story of human suffering and loss on an epic scale. But there is more to that story than scary numbers—a hopeful plot twist in which patients’ health data are transformed into knowledge that guides our way out of the crisis. The National COVID Cohort Collaborative (N3C) is a new effort to collect, harmonize, and collaboratively analyze
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October 21, 2020
From the early days of the COVID-19 pandemic, epidemiologist Melissa Haendel knew that the United States was going to have a data problem. There didn’t seem to be a national strategy to control the virus, and cases were springing up in sporadic hotspots around the country. With such a patchwork response, nationwide information about the people who got sick would probably be hard to come by. Other
October 21, 2020As the pandemic wears on, doctors are learning more about how to better care for patients with COVID-19, but there is still so much to learn. Moreover, the long-term effects of the disease are unknown. So the NIH and its National Center for Advancing Translational Sciences (NCATS) have launched a National COVID Cohort Collaborative (N3C) to collect electronic health record (EHR) data from partners
September 28, 2020Electronic health records are painting a detailed picture of COVID-19 testing, infections, and hospitalizations. This statewide effort—which includes CTSI and several healthcare providers—could help identify disparities and inform interventions to improve outcomes for all Minnesotans.
August 04, 2020Size matters when it comes to research, as illustrated by recent debates about whether hydroxychloroquine is effective against COVID-19. Some small studies showed it was effective while others showed it wasn’t. The studies couldn’t arrive at a definitive answer because they didn’t enroll enough patients to reach sufficient statistical “power.” More relevant results are only now beginning to emerge
July 27, 2020Drawing on electronic health records from across its academic health system, University of California Health has developed a unified, secure data set for use in COVID-19 research. The HIPAA Limited Data Set consisting of clinical information with more than 460 million data points is accessible to researchers across the entire UC system, enabling them to rapidly compare treatment options from-
July 27, 2020Drawing on electronic health records from across its academic health system, University of California Health has developed a unified, secure data set for use in COVID-19 research. The HIPAA Limited Data Set consisting of clinical information with more than 460 million data points is accessible to researchers across the entire UC system, enabling them to rapidly compare treatment options from
-Center for Data to HealthThe Office of Data Science Strategy at the National Institutes of Health (NIH) and the National Library of Medicine are hosting a virtual workshop. NIH is committed to advancing research and its data science efforts to end the COVID-19 pandemic. As part of the larger NIH COVID-19 response, leadership is designing a COVID-19 Clinical Data Hub–a loosely federated system, built by researchers for
-Center for Data to HealthThis free webinar is part of the HL7 HIMSS20 Webinar Series. Healthcare and payer organizations have many reasons to transmit data on large populations of patients, such as moving clinical data into an analytic data warehouse, sharing data between organizations, or submitting data to regulatory agencies. Today, bulk export is often accomplished with proprietary pipelines, and data transfer
-Center for Data to HealthCome join a webinar to discuss the sharing of data for biospecimens and their phenotypes. Chris Chute, MD, DrPH & Melissa Haendel, PhD of CD2H will present: • Perspectives from CD2H for cross-CTSA collaboration • Emphasis on sharing tools and data Next generation tools and best practices will be presented by guest speakers: • UPenn: Danielle Mowery, PhD; Marylyn Ritchie, PhD, and Christian
June 30, 2020People’s expectations for compensation and control may increase as they become more aware of privacy concerns and the ways in which genomic database companies are profiting from their data, according to researchers at Penn State and Cornell University. This research was partially supported by Penn State Clinical and Translational Science Institute through support of Jennifer McCormick, ethics lead
April 23, 2020After months of fierce opposition, the electronic health record company Epic said Thursday it is dropping its opposition to a federal rule designed to improve patients’ access to their medical records, removing a potential barrier to its implementation.
-Center for Data to HealthThe csv,conf brings diverse groups together to discuss data topics, and features stories about data sharing and data analysis from science, journalism, government, and open source. Join the free csv,conf,v5 annual community conference online. Hear interesting ideas for imagining new humanistic and #computational data-related courses from Emily Jacobi and Sisi Wei.
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January 29, 2020
See the outstanding commentary by Ken Mandl and Isaac Kohane. It's time to make healthcare a truly data- and knowledge-driven enterprise. That begins by making sure responsible, scalable, and technology-agnostic data sharing is the norm and not an exception!
State University Of New York At BuffaloThe CTSI Translational Imaging Core supports pre-clinical and clinical imaging, which is a particular strength of researchers in the Buffalo Translational Consortium (BTC). Establishing the Imaging Core in 2015, supported by the CTSA, has enabled us to markedly expand our user base, supporting 102 peer-reviewed publications, 71 funded grants and an additional 77 submitted grants. In addition to