As COVID-19 cases rise and fall at varying rates throughout the world, it’s become clear that the virus affects people and communities in diverse ways, complicating research efforts to fully master its complexity. To discover COVID-19’s impact and further relative research, the university’s Clinical Research Unit (CRU) launched a COVID-19 Registry and Repository through which they collect and store survivors’ stories and blood and saliva samples.
Typically, hospitals collect this kind of information from patients under their care, but many people who had COVID-19 experienced mild symptoms and did not go to the hospital. The CRU Registry and Repository targets this population, collecting data that might otherwise have gone unnoticed. “Most studies recruit in the hospital, whereas we’re reaching out to the community in general. We have people from Miami to Martin County, and about 95% of this cohort didn’t even go to the doctor,” said Ximena Levy, MD, MPH, director of the CRU.
The idea for the Registry and Repository, which opened in August 2020, emerged in the middle of the pandemic as members of the CRU considered what data COVID-19 researchers needed immediately to address gaps in current knowledge and what data they’ll need in the future to answer questions.
Participants make two visits to the Registry and Repository to give samples, take a neurological exam and recount their personal experience of COVID-19.
Each component of the visits yield a different piece of the puzzle. The blood samples provide DNA for genome sequencing, enabling scientists to discover whether there’s a genetic basis behind a person’s ability to recover from COVID-19. The saliva samples will be searched for the presence of biomarkers that indicate disease development. The neurological exam will serve as a benchmark for long-term follow-up. “We’re anticipating a longitudinal study to see if there are longer-term effects neurologically, but we also want to understand the genetic basis for people’s response to the disease. In addition, we want to see if there are biomarkers we can follow during the course of the next several years,” said Gregg Fields, Ph.D., executive director of FAU’s Institute for Human Health and Disease Intervention, which supports the Registry and Repository initiative.
During the interview portion of the visit, participants are asked questions about how they managed their own care, whether they quarantined alone or with family members, and what access they had to the health care system. Participants’ family members may also take part, especially if they quarantined together at close quarters, with a goal that responses will shed light on broader socioeconomic issues relating to health care in South Florida. “It’s different if you quarantine in a seven-bedroom house than if you quarantine in a small apartment with one bedroom. We’re trying to identify disparities and different responses to the disease,” Levy said. “We are also including questions about people’s feelings regarding stigma and discrimination when they tested positive.”
The CRU is continuing to recruit participants for the registry, said Levy, adding that in order to find patterns in the data, they need a large data set. In the meantime, the CRU is unintentionally providing a much-needed service to the community: People really want to talk about their COVID-19 experiences, and the CRU is listening. ⬥