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The lingering coronavirus symptoms collectively
Published on April 14, 2021 11:12 AM

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Jae C. Hong/AP Photo
THE RACE TO SOLVE 'LONG COVID': Researchers racing to understand the lingering coronavirus symptoms collectively known as "Long Covid" face a crucial data problem: They don't know exactly what they should be looking for.

Is it the lingering cough and shortness of breath? Persistent dizziness? Prolonged loss of smell and taste? Or maybe the long-term neurological or psychiatric effects? Entirely new symptoms could manifest months, maybe even years, after infection, and it's not yet clear who's most likely to experience them, experts say.

"We know very little, next to nothing, and that's mainly because we've been — rightfully so — so concerned about the acute phase and how to treat people as they come down with Covid," said Bryan Lau, who's co-leading a Johns Hopkins survey on long-term effects.

Ken Mandl, who heads the Boston Children's Hospital's Computational Health Informatics program, said that "wiring up the health system to study postcovid syndrome" will be a massive undertaking. "We don't know the extent of it, and how IT needs to change to understand it," he added.

Getting a better grasp on the syndrome means setting up entirely new systems to monitor patients' biometrics and vital signs long after they test negative for active coronavirus infection. And as federal rules easing the flow of health data take effect, it could also mean using sophisticated software to look for patterns hidden deep in patients' records, Mandl said.

But that kind of large scale analysis requires change — including how symptoms are documented in health records systems. "The electronic health record doesn't actually tell you what the person has, necessarily, without your going into it and doing human interpretation," he said.