MUSC joins national patient registry that will answer crucial questions about COVID-19

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Size 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 as higher-powered data has become available from studies enrolling more patients.

Definitive answers about COVID-19 will require much larger datasets than those available in any one hospital system. Comprehensive national data will be needed to track the pandemic's spread, assess treatments and identify hot spots.

To meet that need, the National COVID Cohort Collaborative, or N3C, is creating a centralized national registry of patients who have been tested or treated for COVID-19. Participating hospitals will provide COVID-19 patient data twice weekly to keep the registry current.

The project is funded by the National Center for Advancing Translational Sciences (NCATS). NCATS has invited the more than 60 Clinical and Translational Awards (CTSA) hubs, whose mission is to speed research breakthroughs into the clinic, to submit data into the registry.

The South Carolina Clinical & Translational Research (SCTR) Institute, which has an academic home at the Medical University of South Carolina, was among the first five CTSA hubs to sign on to N3C, and MUSC has already begun sharing its data. 

Stephane Meystre, M.D., Ph.D., is the principal investigator of N3C for the MUSC site. Meystre is the SmartState Chair of the Translational Biomedical Informatics Center for Economic Excellence.

A national database makes it possible to have a much larger number of patients and represent the different ways the pandemic is evolving in different regions and populations,” said Meystre.

Beyond tracking the evolution of the pandemic, the national registry will help researchers to study some of the rarer complications of COVID-19, according to Meystre. Researchers could use the registry, for instance, to identify enough pediatric patients who were diagnosed with multi-system inflammatory syndrome in children (MIS-C), which can result from COVID-19, to begin to understand and treat that disease better. 

Perhaps most exciting of all, the enormous dataset will enable artificial intelligence (AI) to unravel some of COVID-19’s mysteries. 

Given access to large quantities of data, AI can see trends and patterns that the human eye cannot. It can even make predictions about what will happen next.

AI algorithms feed on data, and the bigger the dataset, the more accurate its predictions will be. N3C will provide AI algorithms the robust data that is needed to begin predicting COVID-19’s next move and to identify the therapies that will most effectively combat it. 

MUSC was among the first to join N3C because BMIC researchers collaborate closely with investigators at Johns Hopkins University and Oregon Health Sciences University, who are leading N3C, and the University of North Carolina, which is heading up data acquisition for the project. Meystre and other BMIC researchers continue to work with N3C to develop tools using AI for detailed clinical information extraction to help to characterize patients with COVID-19. Investigators can then access the detailed clinical information that is relevant to their research question.

Also key to the early activation of N3C at MUSC was SCTR’s SUCCESS Center and Regulatory Knowledge and Support (RKS) teams and the Office of Clinical Research’s Research Opportunities and Collaborations (ROC) team. Regulatory coordinator Toni Mauney quickly obtained MUSC institutional review board approval and ROC program coordinator Elizabeth Szwast shepherded the project through the activation process. Together, the teams were able to activate the project within two weeks of learning about the opportunity.   

 "Because our hub is so collaborative, we can expedite new collaborations and partnerships quickly,” said Stephanie Gentilin, director of SCTR’s SUCCESS Center and RKS. 

CTSA Program In Action Goals
Goal 5: Advance the Use of Cutting-Edge Informatics