The Global Healthy Living Foundation (GHLF) has launched a study to evaluate the impact of the COVID-19 pandemic on patients with Crohn’s disease and ulcerative colitis, among other autoimmune diseases.
Known as the Autoimmune COVID-19 Project, the study seeks to understand the concerns and behaviors of patients with autoimmune conditions during the COVID-19 pandemic through a series of surveys. In addition to Crohn’s and ulcerative colitis, people with multiple sclerosis, arthritis, and vasculitis are also invited to take part in the study.
Led by CreakyJoints, GHLF’s patient community for people with arthritis, the project is a joint effort with Creaky Joints’ ArthritisPower Research Registry and three other patient research networks — IBD Partners, iConquerMS, and the Vasculitis Patient-Powered Research Network. These four groups are collectively known as the Autoimmune Research Collaborative (ARC), which is focused on carrying out patient-centered research in autoimmune and systemic inflammatory diseases.
“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,” Shilpa Venkatachalam, PhD, associate director of patient-centered research at CreakyJoints and co-principal investigator of ArthritisPower, said in a press release.
Participants will be asked to complete surveys, each taking less than 10 minutes to complete, every two weeks in the first two months, and then again at six and 12 months.
The Autoimmune COVID-19 Project is being conducted in both English and Spanish, and is targeted for patients living in the U.S. and Canada. The study has received independent institutional review board approval.
Patients with Crohn’s disease or ulcerative colitis can join the project via IBD Partners here.
Data collected in the Autoimmune COVID-19 Project will be aggregated and analyzed to describe the experiences and perceptions of patients across different autoimmune conditions. It will also help to assess the risks of different immunosuppressive treatments, and how common COVID-19 infection is in patients with autoimmune diseases.
“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 Michael George, MD, lead investigator of the study and assistant professor of medicine 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,” he added.
Information collected through the project may help optimize patient support and shared decision-making about the management and treatment of autoimmune diseases in the context of an infectious disease pandemic.
“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,” Venkatachalam said.
So far, more than 2,000 registry members of the patient research networks have already entered the study. Recruitment will continue via email, social media, through patient portals, and other sources such as online patient registries held by networks like IBD Partners.
Summaries of the study’s results will be displayed on autoimmunecovid.org. The website will also direct patients to reliable information and updated sources. As the study progresses, the website will display a U.S./Canada map showing where people with autoimmune conditions have reported a respiratory illness (COVID-19 or others, whether or not confirmed with testing) using geolocation data shared by patients.
In addition, “CreakyJoints and partnering patient and rheumatology organizations will use well-established educational channels to disseminate findings to the patient community, … as well as to other researchers, policymakers, and health care providers,” said Seth D. Ginsberg, president and co-founder of CreakyJoints.
“Our expertise in patient-centered research allows us to execute studies relatively quickly and to keep patient communities well informed,” Ginsberg added.