Dallas cardiologists Dr. James de Lemos and Dr. Sandeep Das wanted to help fight COVID-19 last spring. But they felt like bystanders as the pandemic spread, causing disruptions that, among other things, postponed many of their surgeries and procedures.
"It was a weird period in Dallas," de Lemos said. "We knew COVID-19 was coming for us because we saw what was happening in places like Wuhan, China; Italy; Seattle and New York. But we were feeling a little guilty that we weren't in the hospital."
So de Lemos and Das, internal medicine professors at UT Southwestern Medical Center's cardiology division, turned their attention to research. They collaborated with a team of UT Southwestern fellows and other trusted colleagues to start collecting comprehensive information on the cardiovascular implications of COVID-19 among patients in Dallas. This was the groundwork for building a registry that hospitals and other medical sites could use to log patient data in the hopes of helping clinicians understand the virus and determine effective treatments.
Within a few weeks of launching, the doctors said it was critical to quickly expand the registry nationwide.
"Everyone was at a point where we realized this (pandemic) was a disaster in progress," Das said. "At the start, all the data was about single-center experiences. We needed more comprehensive data that wasn't prone to bias or local environment."
That's when they paired with the American Heart Association. This partnership provided access to the AHA's technology and precision medicine platform, which rapidly improved knowledge transfer and let dozens of investigators use the patient data simultaneously. The registry is powered by the AHA's Get With the Guidelines hospital quality improvement program and focuses on granular data collection from centers that routinely test biomarkers in COVID-19 patients.
Creating a registry often takes years to complete. This one was open for business in 24 days, the doctors said.
Now, the AHA COVID-19 CVD Registry includes information from 127 sites and more than 42,000 patients. More than 200 variables are recorded including data on demographics, cardiovascular risk factors, hospitalization treatments, disease severity measures and lab results.
For their contributions, Das and de Lemos will receive the AHA's Award of Meritorious Achievement June 22 at a virtual ceremony that will be livestreamed at 6 p.m. CDT. The AHA presents the award annually to individuals and organizations for projects of national significance.
"The award is humbling," de Lemos said. "We didn't go at this for a specific result or a specific discovery. We weren't looking for a pot at the end of the rainbow. We went at this because it needed to be done and it had to happen as fast as it could."
The doctors credit the long list of UT Southwestern fellows, medical professionals, AHA staff members and volunteers who contributed to creating and maintaining the registry.
"We're keenly aware that we're winning this award on behalf of a group effort that extends to many other people," Das said. "You have no idea if something like this is going to succeed when you're putting in a lot of time and effort at the start. It's amazing to look back after a year and see how this exceeded our expectations."
Researchers have used the registry data to make significant discoveries about COVID-19, the doctors said. Findings have highlighted the disproportionate complications and death rate the pandemic has on Black and Hispanic patients, who often face disparities in health care prior to hospitalization.
Another finding from the registry was that obesity is a major risk factor for severe COVID-19. COVID-19 patients with obesity — many who were notably younger — often required a ventilator and were more likely to die. And the registry has revealed that patients hospitalized with the coronavirus have an elevated risk of stroke, compared with patients studied previously who had similar infectious conditions, such as influenza and sepsis.
"To say this (registry) exceeded our wildest expectations would be an underestimation," de Lemos said. "We realized that research can happen much faster if you think outside the box and leverage technology resources and the talent among investigators across the country."
Other registry research now includes exploring COVID-19 variants and learning how the virus is changing health care around the world.
"We don't want this registry to be static," de Lemos said. "We want to keep trying to evolve to meet the needs of researchers to determine the longer-term cardiac implications of COVID-19."
Das agrees there is still work to be done.
"For now, we know dealing with COVID-19 is putting out the fire," Das said. "There will be another pandemic; it's not a matter of if, but when. Hopefully, the work we did on this registry will help prepare us for the next time."