Grant-funded COVID-19 registry to provide gold mine of information

Grant-funded COVID-19 registry to provide gold mine of information

As the world watches, new information about COVID-19 is coming to light.


The Great Plains Institutional Development Award (IDeA) Clinical & Translational Research (CTR) Network headquartered at UNMC has received a $180,000 grant to participate in a national effort to collect and share data on COVID-19-related patient outcomes for use in research.


The funding from the National Institutes of General Medical Sciences will support data transfer to the National COVID Cohort Collaborative (N3C) Data Enclave — a registry of COVID-19-related information from patients across the country. The enclave will enable researchers with data use agreements from UNMC and seven other IDeA-CTR networks — with support totaling more than $1.4 million — to track the disease in patients across the country.


N3C will help scientists develop insight into potential risk factors, protective factors and long-term health consequences. Currently, 57 sites across the country will share data from electronic health records of individuals (identity of individuals will not be included) tested for COVID-19, including demographics, symptoms, laboratory test results, procedures, medications, medical conditions, physical measurements and more.


Matthew Rizzo, MD, Frances & Edgar Reynolds Chair and professor in the UNMC Department of Neurological Sciences, in collaboration with James McClay, MD, said he and his team rapidly responded to the challenge recently by being the first in the region to contribute to the enclave. Dr. McClay is principal investigator of UNMC’s research data warehouse and director of the Biomedical Informatics Core of the Great Plains IDeA-CTR.


“Being nimble, pivoting quickly and marshaling resources to face down COVID-19 helped create this gold mine for all kinds of answers for all kinds of questions,” Dr. Rizzo said. “Some of the questions we want to answer are: What treatments work? What are the long-term side effects? Is there a greater rate of cognitive problems? Who’s at greater risk? Will the virus have consequences down the road? It’s unprecedented to get so many networks together quickly so we can pool data to help figure out what is going on with this disease and the pandemic.”


By aggregated counts of anticipated positive COVID-19 patients, the N3C Data Enclave is anticipated to be one of the world’s largest collections of data on COVID-19 patients by the end of October.


Dr. Rizzo said the registry also ensures that the data represents the diversity of the country so researchers can understand and address geographic and population disparities during the pandemic. In addition, this approach, he said, creates a robust framework to gain knowledge to face challenges beyond COVID-19.


See more about the N3C Data Enclave.


Researchers wanting to get involved can contact Jerrod Anzalone via email or by calling 402-836-9578.

Leave a Reply