Long COVID Research Includes Unprecedented Patient Involvement: NIH

Lisa Rapaport

December 09, 2022

Editor's note: Find the latest long COVID news and guidance in Medscape's Long COVID Resource Center.

Federal health officials and their research partners are moving with urgency to break down, study, and find ways to respond to the growing long COVID crisis in the United States.

As about 1 in 5 US adults with COVID-19 go on to develop long COVID, the work is vital, Gary Gibbons, MD, director of the National Heart, Lung, and Blood Institute, part of the National Institutes of Health (NIH), said at a Friday media briefing.

The urgency, he said, is "demanded by the suffering of the patients afflicted with this debilitating disorder," many of whom have complex, overlapping clusters of symptoms that make traditional treatment approaches largely ineffective against this new, formidable disease.

"The goal is to rapidly accelerate and advance our understanding of [long COVID] as a means of moving toward predicting, diagnosing, treating, and preventing this disorder ultimately," he said.

This need to move quickly was buoyed in December 2021 when Congress allocated $1.5 billion over 4 years to the NIH to study how to predict, diagnose, treat, and prevent long COVID.

Already, long COVID studies funded by this initiative, dubbed RECOVER, have amassed data on more than 200,000 long COVID cases identified in electronic health records. Searching for patterns in these records has helped scientists identify key risk factors for long COVID, as well as some of the most common symptoms.

It has also revealed some interesting data about long COVID patients that may help shape their care down the line. For example, scientists early in the pandemic realized that type 2 diabetes was one risk factor for developing long COVID. But now, Gibbons said, newer research has also found people with long COVID may be more likely to develop type 2 diabetes.

Early analyses of the data already collected should be ready in the first half of 2023, Gibbons said.

Examining these electronic health records has also helped pinpoint some key areas of focus for NIH clinical trials. One large question is why the virus lingers in some people but not others. Other major questions targeted by trials aim to understand common long COVID symptoms like brain fog, exercise intolerance, sleep disturbances, and dysregulation of basic functions like regulating heart rate and body temperature.

The scale and size of trials so far is staggering, enrolling about 11,000 patients in a year, Gibbons said. Scientists are making "rapid progress in building what already is the largest, most diverse, and what will be the most comprehensively defined cohort of [long COVID] patients in the world that exists to our knowledge," Gibbons said.

Fast, Nimble, but Trusted

In addition to human trials, scientists funded by the NIH are also using animal and human blood and tissue samples to explore the biological underpinnings of long COVID in their labs. "I think we can see a pathway where we will get some insights into pathogenesis," Gibbons said.

Over the next 6 months or so, the NIH expects to start more trials, Gibbons said. Despite the sense of urgency, he stressed that researchers still must set a pace that makes it possible to trust the findings. Gibbons also emphasized that research efforts must be nimble to adjust as medical experts learn more about long COVID.

"I think it's critically important that we get the right answer, not just the quickest answer," Gibbons said.

Complicating this need for speed is the potential for long COVID characteristics to shift over time as the virus mutates, said Lawrence Tabak, DDS, PhD, acting director of the NIH.

"Somebody who was infected with the ancestral strain may look very different from somebody infected with Omicron," a more recent mutation, Tabak said. "That doesn’t make things any easier." 

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