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Taking the measure of long COVID syndrome
Vaccines, antivirals, and supportive care have helped millions of people recover from COVID-19. But for some, symptoms persist, recur, or arise after the acute phase of infection has passed. According to one study of 250,350 survivors in the Journal of the American Medical Society Open, at least half had one or more symptoms six months […]
Vaccines, antivirals, and supportive care have helped millions of people recover from COVID-19. But for some, symptoms persist, recur, or arise after the acute phase of infection has passed.
According to one study of 250,350 survivors in the Journal of the American Medical Society Open, at least half had one or more symptoms six months or more later.
In the fall of 2021, the National Institutes of Health launched the $450 million RECOVER Initiative to learn why people suffer symptoms of long COVID, notably pain, fever, headaches, fatigue, brain fog, shortness of breath, chronic cough, sleep problems, and anxiety and depression. Northeastern is one of 30 institutions charged with asking: What causes long COVID? What might be done to prevent and treat it?
Researchers will have access to data from a large, diverse cohort of patient volunteers. Data will include not only information from electronic health records, but also patients, gathered from surveys in real time through mobile apps and wearable devices.
Patient engagement is key, says OHDSI Inaugural Director Kristin Kostka. According to the Patient-Led Research Collaborative, an advocacy group that helped shape RECOVER, only about 25% of long COVID patients have documentation of testing positive. Moreover, Kostka notes, the group has shown that “patients routinely report more than 50 different symptoms, but they’re lucky if one or two are recorded in their electronic health record.”
The OHDSI Center team’s roles are to characterize long COVID in databases and make sure data is properly collected and can be harmonized across study sites. “Our quest will be to do patients justice by merging their own survey responses with their EHRs,” Kostka says.
Health conditions with symptoms that are to a degree subjective and trickier to measure than, say, a lab test, are generally understudied, she says. She offers chronic fatigue and a blood-circulation disorder known as postural orthostatic tachycardia syndrome as examples. Patients’ concerns often go undocumented, so they aren’t included in research. And clinicians may fail to take them seriously.
Funded for three years so far, RECOVER is on a fast track, with the OHDSI team hard at work. The goal is to discover, quickly, the incidence and prevalence of long COVID, its causes, risk factors, patient outcomes, and strategies for treatment and prevention.