COVID-19 Patient Registry for People with Autoimmune Diseases, Including MS, Launches
A new longitudinal study Autoimmune COVID-19 Project (NCT04344210) for individuals with multiple sclerosis (MS), arthritis, Crohn’s and colitis, and vasculitis and will track the evolving effects of COVID-19 on individuals living with these conditions. The study is being led by CreakyJoints and implemented via its 30,000-member ArthritisPower Research Registry in partnership with 3 other patient groups, IBD Partners, iConquerMS, and the Vasculitis Patient-Powered Research Network.
The Autoimmune COVID-19 Project will evaluate respiratory testing and illnesses and the concerns and behaviors of individuals over time. Expanding on an existing NIH-funded project, the patient-powered, IRB-approved study is being conducted in English and Spanish and enables efficient partnership with additional patient and academic organizations.
“Patient surveys collected at regular intervals will study patients’ respiratory illness symptoms, experiences of COVID-19 testing, modified doctor visits using telehealth, concerns and choices regarding immunosuppressive therapy, and preferred sources of information about COVID-19,”said study lead Shilpa Venkatachalam, PhD, associate director of Patient-Centered Research at CreakyJoints and coprincipal investigator of ArthritisPower. “We need information about the impact of COVID-19 on patients with autoimmune, rheumatic, and related conditions in order to provide support for health decision making, especially given the heightened risks associated with a highly transmissible infection.”
“We intend for the patient-facing questions asked in our COVID-19 registry to complement the data being gathered by physician-facing registries by collecting information only patients can provide,” explained lead investigator Michael George, MD, assistant professor of Medicine and assistant professor of Epidemiology in Biostatistics and Epidemiology at the Hospital of the University of Pennsylvania. “Our common objective is to help generate knowledge that can inform physicians and policymakers about how best to care for these vulnerable patients, especially during an infectious disease outbreak.”
The Autoimmune COVID-19 Project is part of a broader effort led by CreakyJoints and other patient research networks to understand the unique perspective and experiences of patients. With the launch of this project, CreakyJoints builds on their expertise in rapidly developing infrastructure for studies such as these. As a result of a soft launch, more than 2,000 consented registry members have participated in the longitudinal study. Notably, ArthritisPower participants who contribute data to the study can link their patient-reported outcomes to their electronic health record.