The Centers for Disease Control and Prevention (CDC) reported in June that over 40% of Americans have had COVID-19 and that nearly 20% of those individuals, or close to 20 million American adults, continue to have Long COVID. 

In response to this crisis, the nationwide RECOVER Initiative was created by the National Institutes of Health (NIH) to support an exhaustive observational examination into the mysterious illness and recruit people from every affected population. So far, this ambitious scope seems to be an Achilles’ heel.

Off to a slow start (still)

In an interview with MedPage Today, Walter Koroshetz, M.D., who directs the NIH’s National Institute of Neurological Disorders and Stroke and co-chairs RECOVER’s Senior Oversight Committee, explained that the project’s range of goals and attempt at broad inclusivity have led to its slow start, as has the condition’s complex nature.* 

The “whole purpose” of the project is to create solutions for the medical community, said Koroshetz, “but if it’s quick and easy, then someone else is going to get it quick and easy and that would be fine. RECOVER was set up as if there is no quick, easy solution to this problem. And we know right now that looks like the case.” He said there’s a “real chance” the project will take the complexity of a similar post-viral illness, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

“RECOVER is put together to leave no stone unturned, so if we don’t figure this out at the end of RECOVER, it’s not because we didn’t try. It’s going to be because it’s just too hard a problem.”

More participants needed for certain groups

While overall adult enrollment for RECOVER has been according to plan, Koroshetz said filling certain population groups has been slow.

• The acute infection group has lagged due to lack of awareness, since most people with COVID-19 are no longer seeking treatment and therefore not learning of the program from their healthcare providers. This group has been the hardest to fill. Researchers are anxious to learn how people who recover from COVID with and without lingering symptoms compare to each other.
• Recruiting for the autopsy group has also been a challenge. Researchers have not done enough to make the public aware of RECOVER and of the need to plan for their automatic enrollment upon death in order to participate.
• The pediatric group is suffering mostly from processing delays, said Lawrence Kleinman, M.D., MPH, who heads RECOVER’s pediatric study unit at Rutgers University.

Kleinman compared RECOVER to trying to assemble an aircraft as it’s headed down the runway. He explained that the project is complicated in recruitment, assessment, and lack of a firm definition for Long COVID that gives researchers a framework.

A slow buildup?

The primary adult study group is one population that has been recruiting without difficulty. West Virginia University’s Sally Hodder, M.D. said her study sites are on their way to reaching a goal of 914 participants, albeit just a fraction of the nearly 18,000 participants needed for the study group. 

Still, Hodder said, most studies start slowly, then the enrollment curve steepens. “In fact, that is exactly what is happening with RECOVER,” she added. Greater awareness of the study makes recruitment easier.

Despite the enrollment snags, the researchers say they’re on the right track to a better understanding of Long COVID so providers can have better tools to treat patients. 

“I feel the frustration, but I do feel that this is the best thing to do, so that we’re not frustrated 10 years from now,” said Koroshetz. “It’s the best chance of getting the answers.”

Ways to get involved with RECOVER can be found at https://recovercovid.org/community.

*DePeau-Wilson, M. (2022, June 23). RECOVER Researchers Express Hope and Frustration in Their Study of Long COVID. MedPage Today. https://www.medpagetoday.com/special-reports/exclusives/99403