Eye on WNY: UB Launches Long COVID Registry

Western New York and the world continue to grapple with the impacts of the COVID-19 pandemic. One of these is long COVID, a condition in which some individuals who have been infected with the virus that causes COVID-19 experience long-term effects from their infection.

According to the Centers for Disease Control, a wide range of symptoms can be experienced for weeks or even months following infection, including:

• Tiredness
• Fever
• Difficulty breathing or shortness of breath
• Cough
• Chest, stomach, joint, or muscle pain
• Fast-beating heart
• Difficulty thinking or concentrating (or “brain fog”)
• Headache
• Sleep problems
• Dizziness when you stand up
• Pins-and-needles feelings
• Change in smell or taste
• Depression or anxiety
• Diarrhea
• Rash
• Changes in menstrual cycles

To learn more about long COVID-19, the University at Buffalo and UBMD Physicians’ Group have launched a long COVID registry that will connect Western New York residents with treatment options and the potential to participate in clinical trials. It is accessible by computer or any kind of mobile device.

This survey, in which people may describe their symptoms in detail, is open to any Western New Yorker aged 18 or older who may have long COVID. Information shared by patients will be kept secure and confidential, and patients who sign up will be able to opt in with consent to be contacted with relevant information, research, or care opportunities.

As outlined in a recent UBNow article, a number of UB faculty with Clinical and Translational Science Institute (CTSI) affiliations were involved with the development of the registry, including 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; CTSI Director Timothy F. Murphy, MD, SUNY Distinguished Professor and Senior Associate Dean for Clinical and Translational Research; and CTSI Board Member Jean Wactawski-Wende, PhD, SUNY Distinguished Professor and Dean, School of Public Health and Health Professions.

Sethi explained to the Buffalo News that while the registry is currently focused on research, it may eventually help connect long COVID patients with treatment opportunities.

“This is the next stage,” Sethi said. “We're still dealing with acute COVID but not as much, but we really need to focus our attention on this now — both on the research and the treatment.”

“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,” said Allison Brashear, MD, MBA, Vice President for Health Sciences, Dean, Jacobs School, and President, UBMD Physicians’ Group, in the UBNow article. “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.”