UB researchers continue exploring long COVID in year two of registry

In August 2022, the University at Buffalo and UBMD Physicians' Group launched the WNY Long COVID Registry, which connects Western New Yorkers with support options, provides education, and shares clinical trial opportunities. One year later, nearly 1,000 Western New Yorkers have registered.

“There is a bidirectional aspect to the registry — it is not just gathering information; we are educating,” says UB Clinical and Translational Science Institute (CTSI) Associate Director Sanjay Sethi, MD, Professor and Chief, Pulmonary, Critical Care and Sleep Medicine, and Assistant Vice President for Health Sciences, Department of Medicine, Jacobs School of Medicine and Biomedical Sciences, and Chief, Division of Pulmonary, Critical Care and Sleep Medicine, UBMD Internal Medicine. “The education aspect is important, [especially] about unproven treatments that may not work and may also cause potential harm.”

The National Center for Health Statistics recently shared that almost 7% of US adults have had long COVID and 3.4% currently have long COVID (link). To the UB researchers involved with the registry and the UBMD Long COVID Recovery Center, these numbers demonstrate the value of signing up Western New Yorkers who believe they may have long COVID.

“We are providing support,” says Jennifer S. Abeles, DO, Clinical Assistant Professor, Department of Medicine, Jacobs School, and a primary care physician at UBMD Internal Medicine. “Registrants receive a newsletter every month with the latest news. As research comes up through the university, and if there are treatments that could potentially support you, we will share that information.”

‘We believe you’

Symptoms of long COVID include, but are not limited to, chronic fatigue, shortness of breath, brain fog, confusion, memory loss, and heart rhythm irregularities. There are mysteries yet to be solved, including how to provide treatment.

“Part of the reason we do not have any treatments is because we really do not understand the pathophysiology and the pathogenesis,” Sethi explains. “People may get to [long COVID] by different mechanisms. There are interesting theories out there, and there is evidence for each one, but none are clear.”

Still, simply acknowledging that long COVID exists is proving to be impactful for Western New Yorkers. As Abeles says, symptoms do not always show up in medical tests.

“We support members of the registry by saying, ‘We believe you, we are here to support you, and we are going to work on this together.’ I think that brings a sense of relief: ‘I am not on my own. Someone is listening to me.’”

‘We want to help people who might not know there is help available’

A key element of the registry is connecting people with research opportunities. About 250 registrants were referred to a UB clinical trial testing low-dose lithium as a potential treatment, with a substantial portion of the study enrollees coming from the registry. “We are reaching out to investigators to let them know we have patients who would be willing to participate in studies,” Sethi says.

Sarah Thomas-Lugo, MPH, Research Coordinator, Clinical Research Office, Jacobs School, says follow-up surveys for registrants have been implemented, “to track people's progress with their experience with long COVID. We are seeing many people who are willing to tell us more about their experiences.”

Input from members of the registry, as well as the greater Western New York community, is helping to make the registry even more beneficial for members. A recent CTSI Community Engagement Studio session “was very useful and there were several good suggestions about how to disseminate information about the registry and the recovery center,” Sethi says. “One suggestion we have already implemented is the language level of the website. We have made it simpler based on the recommendations from the studio session.”

Connecting with groups in the community, including the Buffalo Urban League, is also enhancing the registry approach.

“We want to make sure our message is getting out there,” Abeles says. “The registry team is looking at different podcasts and websites where other individuals might be able to receive this information — we want to help people who might not know there is help available.” To that end, members of the registry are also being connected to local support groups.

Now that a year has passed, the team is focused on analyzing the collected data; the CTSI’s Biostatistics, Epidemiology, Research Design (BERD) Core is assisting in these efforts. Abeles says, “One of our goals is to share that information with everyone on the registry. They have supported us in providing their information, and now we want to look back and say, ‘What do we know now after year one?’”

To visit the UBMD Long COVID Recovery Center, individuals are strongly encouraged to sign up for the WNY Long COVID Registry by entering the registry and filling out a questionnaire. For any questions, contact 716-382-1808 or ubcov@buffalo.edu.