To better understand the concerns and behaviors of people with autoimmune conditions during the COVID-19 pandemic, the Global Healthy Living Foundation (GHLF) and its digital patient community, CreakyJoints, have launched a longitudinal study for those with vasculitis, arthritis, multiple sclerosis, and inflammatory bowel disease (IBD).
Named the Autoimmune COVID-19 Project, the initiative will be implemented by CreakyJoints’ patient registry ArthritisPower Research Registry, along with three other patient research networks, the Vasculitis Patient-Powered Research Network (V-PPRN), iConquerMS, and IBD Partners. These four groups form the Autoimmune Research Collaborative, which aims to support patient-centered research in autoimmune conditions.
For the study, each network is recruiting patients with the conditions they represent. Those with vasculitis should join the Vasculitis COVID-19 Patient Project, led by the Vasculitis Foundation and V-PPRN.
“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,” Shilpa Venkatachalam, PhD, associate director of Patient-Centered Research at CreakyJoints and co-principal investigator of ArthritisPower, said in a press release.
The Autoimmune COVID-19 Project, being conducted in English and Spanish, seeks to find out how patients are dealing with the pandemic, including their respiratory disease symptoms, whether they have been tested, their experience with testing, and whether they underwent doctor visits using telehealth.
Surveys will also include information about concerns and changes in immunosuppressive therapy — which is believed to put patients at greater risk for severe infections — and the sources used to gather information about COVID-19. The patient-centered project aims to complement other sources of data reported by physicians.
Also, while most registries include data from a single survey or assessment, patients in the Autoimmune COVID-19 Project will be asked to fill out a questionnaire several times over one year. After sharing their email address, patients will receive questionnaires every two weeks for about two months, and then again at six and 12 months. Each questionnaire should take less than 10 minutes to complete.
“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,” said lead investigator Michael George, MD, an assistant professor at 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,” he added.
The project is aimed at people in the U.S. and Canada. CreakyJoints and ArthritisPower will collaborate with other patient groups to increase long-term participation in the project.
As more data are being collected, the project’s website will feature a map showing the location of people with autoimmune and rheumatic diseases who reported respiratory symptoms, related to COVID-19 or not. It will also include summaries of results and links to credible COVID-19 information and updates.