As the medical director of the Johns Hopkins Biocontainment Unit, pulmonologist Brian Garibaldi was among the first to care for patients coming into the hospital with severe COVID-19. Almost immediately, he began meeting with other front-line clinicians to share observations that could help shape care protocols and clinical trials — at Johns Hopkins and beyond.
“We were only about two or three weeks into the pandemic,” recalls Garibaldi, “when Antony Rosen, vice dean for research for the school of medicine and the Cosner Family CIM Scholar, asked me a simple question: ‘What percentage of our patients have had a lab value of this particular amount?’ And I replied, ‘Gee, Antony, I can tell you anecdotally, but I can’t recall all of them.’”
“’We don’t have a data repository?’ Antony asked. ‘We have to create one right now!’”
And so they did. In the course of a weekend, the scientists conceived and submitted a plan for what has become the JH-CROWN registry, a collection of data and information about patients having suspected or confirmed cases of COVID-19 infection. While the main source is Johns Hopkins’ electronic medical record system, Epic, the registry also includes data from other sources, such as biospecimen repositories and physiologic device monitoring systems.
The registry, which utilizes the Johns Hopkins Precision Medicine Analytics Platform, offers a treasure trove of data that scientists across Johns Hopkins are tapping into for their COVID-19 research.
“The JH-CROWN registry currently includes data from 3,500 inpatients who tested positive for COVID-19 as well as data from tens of thousands of others who have been tested for COVID-19 at one of our Johns Hopkins locations,” says Garibaldi, the Douglas Carroll, MD, CIM Scholar. “Already, there are 25 approved research projects in the works, and many more will be coming online soon.”
“There are some truly exciting things happening with this data set,and it is really informing how we provide clinical care.” — Brian Garibaldi
Some investigations are descriptive, offering insights into the disease trajectory of a particular cohort of patients: “For instance, we are seeing ‘X’ number of Latinx patients with COVID-19, and this is how that rate is changing over time,” Garibaldi says. Other areas of inquiry are more complex — “such as scientists who are conducting comparative analyses of various treatments.”
In a paper published in late September in Annals of Internal Medicine, Garibaldi and biostatistician Jacob Fiksel provided insights into the disease trajectory of hospitalized patients with COVID-19 and the risk factors associated with severe outcomes. “Progression to severe disease or death can be rapid,” notes Garibaldi, “so the hope is that these insights can help clinicians intervene effectively during the narrow window after a patient is admitted.”
A number of other scholarly papers are currently under review, and Garibaldi expects them to be published soon. “There are some truly exciting things happening with this data set,” he says, “and it is really informing how we provide clinical care.”
Data from the JH-CROWN registry is also being shared with the National COVID Cohort Collaborative, a resource that is collecting data from electronic health records of different institutions across the country and harmonizing it into a “data enclave” for use by investigators all over the nation.
“By tapping into all of these data resources,” says Garibaldi, “we are really hoping to make discoveries that will change the way we think about COVID-19 and the way we manage it.”