November 2022 Newsletter
Published November 1, 2022
The Western New York Community-Based Long COVID Registry, known as the UBCoV, has been developed as a result of a collaboration amongst the Jacobs School of Medicine and Biomedical Sciences, the School of Public Health and Health Professions and UBMD Physicians’ Group.
The registry aims to identify individuals who have recovered from acute COVID, including those with long COVID, in order to assess the extent of the problem in Western New York, provide education to community members and identify potential volunteers to participate in clinical trials.
Long COVID, also referred to as post-acute sequalae of SARS-CoV-2, or PASC, afflicts as many as a third of the nearly 80 million people across America infected with coronavirus. Those affected continue to suffer from persistent symptoms including chronic fatigue, shortness of breath, confusion, memory loss and heart rhythm irregularities.
Long COVID is a chronic condition that remains uncertain. There is no test to detect long COVID and there is not an accurate number of people affected. Researchers are still learning about long COVID, its true definition, and what recovery looks like for patients. Studies vary in the prevalence of long COVID after COVID-19 infection, with reported incidences of 4 to 48%.
With more than 23 symptoms documented, the most common symptoms seem to be fatigue, shortness of breath and brain fog, also known as COVID fog. Some good news: there is reason to believe that keeping up with vaccines may reduce the chances of developing long COVID.
What is the registry?
The registry is a survey, or a form, that you can complete if you have or think you have long COVID. The registry information submitted will help clinical researchers understand long COVID in our community.
Why participate?
The registry provides you with an opportunity to share your story, symptoms and experience with COVID-19 and long COVID in addition to expanding researcher and clinician knowledge about long COVID.
How will the registry advance care in the area?
It is estimated that close to 100,000 individuals in Western New York have long COVID, about 25,000 residing in the City of Buffalo. Through the registry and studying its results, researchers and clinicians will gain a better understanding about long COVID and aid in designing research and treatment options for those with long COVID. The registry will provide a deeper understanding of long COVID's prevalence and impact in our community.
If you had COVID-19 and would like to participate, enter the registry and begin filling out the questionnaire.
If you have already participated, feel free to share with others who may be interested.
Contact us: (716) 382 - 1808 / ubcov@buffalo.edu