Published September 22, 2022
UB and UBMD Physicians’ Group have launched the long COVID registry to learn more about the condition and to connect Western New Yorkers with treatment options and the potential to participate in clinical trials.
Open to anyone 18 years of age or older in Western New York who has, or thinks they may have, long COVID, the registry is a questionnaire that allows people to describe their symptoms in detail.
The registry was designed to be easily accessible, either by computer or any kind of mobile device, in order to reach as many people as possible.
“The bottom line is, there is still a great knowledge gap and a great deal of uncertainty about long COVID,” says Kevin J. Gibbons, senior associate dean for clinical affairs at the Jacobs School of Medicine and Biomedical Sciences at UB and executive director of UBMD Physicians’ Group. “It is not surprising that patients who survived after long intensive care unit admissions have problems with breathing and generalized fatigue.
“It remains a puzzle,” Gibbons says, “why some patients, often months after minor COVID infections, have delayed onset of significant disabling health problems. The good news is that in the majority of patients, long COVID gets better, but some people do experience long-term disability. There is still a lot that we just don’t understand.”
Even the definition of long COVID is evolving, with the Centers for Disease Control and Prevention and the World Health Organization providing slightly different definitions. Generally, it is defined as symptoms that last weeks or months past initial infection with the SARS-CoV2 virus.
“Whether you became infected with COVID-19 when it first hit in 2020 or just in the last six months, if your symptoms just haven’t gone away, and you suspect or know you have long COVID, we encourage you to participate in the long COVID registry,” says Allison Brashear, vice president for health sciences, dean of the Jacobs School and president of UBMD Physicians’ Group.
“Our UB physicians and researchers want to hear from you and learn more about long COVID in our community so that we can bring relevant research opportunities and clinical trials to UB to provide care to those who need it most,” she says.
Information that patients share on the UB registry will be kept secure and confidential. Patients who sign up will be able to opt in to consent to contact, where they provide their contact information so that they can be the first to find out when UB has relevant information, research or care opportunities that might help them.
The UB site will also feature a collection of curated, reliable resources, including new research that is relevant for people with long COVID.
“The long COVID registry gives people in our community who are suffering with long COVID a chance to tell their story to researchers at UB so we can learn about this condition in Western New York, and possibly get these people the help that they need,” says Gibbons. “I urge anyone who has long COVID or suspects they have it to go to the long COVID registry and share their experience.”
The UB/UBMD registry is the only effort in the region designed specifically to collect and analyze data from Western New Yorkers with long COVID in order to design effective treatments for them.
Funded by the Office of the Vice President for Research and Economic Development, the registry was developed by faculty, staff and physicians across UB and UBMD.
Open to anyone living in the five counties of Western New York, the registry was designed by Jacobs School faculty with input from UBMD, UB’s Community Health Equity Research Institute and the School of Public Health and Health Professions.
UB researchers note that local support groups have helped to validate the existence of long COVID, which is also critical.
“Here at UB, we are focusing on research because research is what UB is about,” says Jennifer S. Abeles, principal investigator on the long COVID registry, clinical assistant professor of medicine in the Jacobs School and a physician with UBMD Internal Medicine. “We need to understand the condition better in order to treat it.”
The first step is to collect as much detailed information from patients as possible through the registry and to analyze it. One of the challenges with long COVID, Abeles explains, is the sheer breadth of symptoms reported. While the most common symptoms reported have been primarily respiratory and neurological, Abeles notes that many other symptoms have also been reported.
“For example, we know that some people are reporting hair loss,” she says. “This is a symptom that bothers people monumentally. And we think there may be other symptoms of long COVID that aren’t being widely reported.”
By gathering as much data as possible about what Western New Yorkers with long COVID are experiencing, the registry will allow UB researchers to better understand the range of symptoms and how they impact patients.
The advantage of signing up is that a UB researcher who might be studying, for example, the symptom of brain fog can use the registry to learn about patients in the community who have that symptom. They can learn how many patients have had this symptom, how it manifested, for how long, what the severity was and whether it was more common in patients of a certain gender or age group.
“The value of people filling out the questions on the registry is that they will be getting their information directly to the UB researchers who are actively studying these issues right now,” Abeles says. “The goal is to connect them with helpful information and, ultimately, appropriate opportunities for treatment.”
“The registry is here for the long term. It’s not going to be one and done,” she says, noting that in the near future, once people sign up, they will be asked to update information at periodic intervals so researchers can track as their symptoms change or improve.
“We envision the registry becoming a dialogue, a conversation between people with long COVID and researchers,” Abeles says. “The ultimate goal is to provide them with quality care.”
In addition to Abeles and Gibbons, other faculty involved with developing the registry include Tim Murphy, SUNY Distinguished Professor and senior associate dean for clinical and translational research; Sanjay Sethi, chief, Division of Pulmonary, Critical Care & Sleep Medicine, Jacobs School and at UBMD Internal Medicine, and director, Clinical Research Office; Tom Russo, SUNY Distinguished Professor and chief, Division of Infectious Diseases, Jacobs School and at UBMD Internal Medicine; and Jean Wactawski-Wende, SUNY Distinguished Professor and dean, School of Public Health and Health Professions.