June 08, 2021

COVID-19 data enclave hits major milestone, provides access to 1.6 million COVID-positive patients

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Head shot of Dr. James Cimino, MD (Professor, Internal Medicine; Director, Informatics Institute), 2015.James Cimino, M.D.UAB researchers have access to utilize one of the largest collections of clinical data related to COVID-19 symptoms and patient outcomes in the U.S.

This data platform, the National COVID Cohort Collaborative (N3C) Data Enclave, now includes electronic health records, including demographic and clinical characteristics of more than 1.6 million patients who tested positive for COVID-19 (see here for full list of data elements).

Over 200 research projects across the country are using N3C to explore clinically important questions about COVID-19. In addition, several clinical and cross-cutting domain teams have emerged, leading collaborative investigation in areas of acute kidney injury, cardiovascular disease, diabetes & obesity, environmental health, neurology, long COVID, rural health and pregnancy, to name a few.

The Center for Clinical and Translational Science (CCTS), with leadership by James Cimino, M.D., CCTS co-director and UAB Informatics Institute director, and Matthew Wyatt, MSHI, CCTS director of Clinical Research Informatics, was among the first institutions to join and send data to the N3C data enclave and can help guide researchers in gaining access. Here is how to get started:

Secure IRB approval. Submit a request for human subjects research exemption from your IRB (see template here). See also this example of the HIPAA Waiver Request

Connect your IRB approval request to the N3C research initiative. Here's how: The IRB EPortfolio contains this question: Does the project involve other agreements not identified by an OSP Assigned Number (e.g. Fee for Service)?“ Respond with text that includes the following information: "The N3C DUA corresponds to OSP# 000529456 and IRB-300005342, both led by CCTS Co-Director and UAB Informatics Institute Director James Cimino, M.D.” 

On-board with the N3C data enclave. Register for membership (ORCID ID required) and gain access to workstreams (e.g., Collaborative Analytics) to share how-to’s and solutions.

Read the N3C Data User Code of Conduct.

Create an account to access the N3C Data Enclave.

Train Up! All users of the N3C Data Enclave are required to complete the 2020 Information Security, Counterintelligence, Privacy Awareness, Records Management Refresher, Emergency Preparedness Refresher. Users are also expected, but not required, to complete the Palantir Fundamentals training course available within an active N3C account.

Prepare information to submit a Data Use Request (DUR). Guided by this template, a DUR will need to be completed online upon accessing the enclave, requiring upload of your IRB approval letter. ​​​​​​​

Explore N3C Domain Teams and consider joining a group of interest.

The CCTS and the UAB Informatics Institute hosted an N3C workshop aimed at preparing researchers to utilize this data resource. Access those presentation slides here. Questions? Contact the CCTS.