A New COVID-19 Research Tool

By Jane Farrell

The federal National Institutes of Health (NIH) has launched a centralized, secure “enclave” to store and study vast amounts of medical record data from people diagnosed with COVID-19 across the country. It is part of an effort, called the National COVID Cohort Collaborative (N3C), to  help scientists analyze these data to understand the disease and develop treatments for the pandemic.

This effort aims to transform clinical information into knowledge urgently needed to study COVID-19, including health risk factors that indicate better or worse outcomes of the disease, thus identifying potentially effective treatments. treatments.

The N3C is funded by the National Center for Advancing Translational Sciences (NCATS), part of NIH.  The information collected will enable researchers to look at clinical, laboratory and diagnostic data from health care provider organizations nationwide. It will then synthesize the aggregated information into a standard format and make it available rapidly for researchers and health care providers.

Authorities are taking steps to ensure the database remains available only to registered users.

Having access to a centralized data bank of this magnitude will help researchers and health care providers answer clinically important questions they previously could not, such as, “Can we predict who might need dialysis because of kidney failure?” or “Who might need to be on a ventilator because of lung failure?” and “Are there different patient responses to coronavirus infection that require distinct therapies?”

“NCATS initially supported the development of this innovative collaborative technology platform to speed the process of understanding the course of diseases, and identifying interventions to effectively treat them,” said NCATS Director Christopher P. Austin, M.D. “This platform was deployed to stand up this important COVID-19 effort in a matter of weeks, and we anticipate that it will serve as the foundation for addressing future public health emergencies.”

Data access will be open to all approved users, regardless of whether they contribute data. The data are being provided to NCATS as a Limited Data Set (LDS) that retains only two defined elements: patient zip code and dates of service.

NCATS, which is serving as stewards of the data, is taking multiple security and privacy measures. For example, NCATS oversees the use of N3C through user registration, federated login, data use agreements with institutions and data use requests with users. The data reside and remain in NCATS’ secure, cloud-based database certified through the Federal Risk and Authorization Management Program, or FedRAMP, which provides standardized assessment, authorization, and continuous monitoring for cloud products and services ensuring the validity of the data while protecting patient privacy. Approved users must analyze data within the platform.

In addition, the N3C data will be used only for COVID-19 research purposes.

“The exciting transformation this platform represents is in providing an environment where data and the power of the analytics can be used by researchers and clinicians to quickly examine and answer new COVID-19 hypotheses,” said Warren A. Kibbe, Ph.D., chief of Translational Biomedical Informatics in the Department of Biostatistics and Bioinformatics and chief data officer for the Duke Cancer Institute.