The Autoimmune COVID-19 Project: A Patient-Centered Initiative

doctor using ipad, telemedicine, telehealth
Study leads Shilpa Venkatachalam, PhD, and Michael George, MD, discuss the highlights of a new initiative to track the effects of COVID-19 in autoimmune disorders.

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the highly contagious and phenotypically diverse virus that causes the coronavirus disease 2019 (COVID-19), has had a negative effect on the health of individuals, particularly those with chronic and underlying conditions, including autoimmune disorders.1

To track the effects and consequences of COVID-19 in autoimmune disorders, including multiple sclerosis, arthritis, Crohn disease, colitis, and vasculitis, and also to understand the unique perspectives of people living with these conditions, the Global Healthy Living Foundation and CreakyJoints® have developed a longitudinal study called the Autoimmune COVID-19 Project.2

To get more insight into this initiative, we spoke with study authors Shilpa Venkatachalam, PhD, associate director of patient-centered research at CreakyJoints, and co-principal investigator of ArthritisPower, and Michael George, MD, assistant professor of medicine and epidemiology at the Hospital of the University of Pennsylvania, Philadelphia. The interview has been edited for clarity and length.

Tell us about the Autoimmune COVID-19 Project and how it was conceived.

Dr Venkatachalam: The Autoimmune COVID-19 Project is an initiative of the Autoimmune Research Collaborative, which includes 4 Patient-Powered Research Networks (PPRN; CreakyJoints’ ArthritisPower® Research Registry, Inflammatory Bowel Disease Partners’ Crohn’s & Colitis Foundation, iConquerMS™ plus the Accelerated Cure Project, and Vasculitis PPRN along with the Vasculitis Foundation) that are working together to conduct patient-centered research in adult autoimmune conditions.  

When the severity of the COVID-19 pandemic became evident, we started having conversations with patients, clinicians, and researchers to gain a perspective on what this crisis might mean for patients with chronic and underlying conditions, including those with rheumatic disease.

What makes this study unique is that it is more than just a snapshot in time of patient perspectives. By a longitudinal analysis, this study aims to help us understand the experiences, beliefs, and concerns of patients with respiratory illness symptoms, COVID-19 testing, modified doctor visits using telehealth, the choices they make about immunosuppressive treatments, and their preferred sources of information about COVID-19. Through this method, we can advance our understanding on how an infectious disease pandemic affects the quality of life of these patients, and it helps us provide better support for these populations in a way that can also enhance shared decision-making for the management of autoimmune diseases.

Could you describe the process of data collection for this project?

Dr George: For the Autoimmune COVID-19 Project, [with the help] of the 4 PPRNs, surveys have been developed with patient input to ensure that we are addressing the pertinent questions. Because this study is being conducted online, surveys will be administered electronically and patients can participate via their mobile devices or computers. Over time, data will be aggregated and analyzed, and the important deidentified, aggregated data shared with patients. Sharing data with patients is a key part of patient-centered research.

We have also developed an associated website for this study to keep patient communities well-informed. As the study advances, the website will also feature a map of the United States and Canada that indicates the location from where patients with autoimmune, rheumatic, and related conditions have reported respiratory illness or a diagnosis of COVID-19.

What is the importance of patient-reported outcomes in the Autoimmune COVID-19 Project?

Dr George: Patient-reported outcomes are a critical tool that can guide all aspects of health care, including clinical care, policy making, quality of life improvements, better therapeutic interventions, and increased patient satisfaction.

With COVID-19, there are many things that we can only learn directly from patients. We want to understand how certain factors, including patient perspectives, affect what patients are doing, their levels of immunosuppression, and interactions with the healthcare system. This information can guide shared decision-making and it can help healthcare providers understand what is most important to patients. All these practices contribute to better care by the clinician for the patient, increased engagement, clinical decision making, and hopefully, improved satisfaction and outcomes.

There are standardized instruments and tools developed by institutions like the National Institutes of Health to ensure that such information is collected in a reliable manner so that it can be used at point-of-care and integrated into clinical care.

Understanding the experiences and beliefs of patients and the impact of the pandemic on the quality of life of these patients is especially important given that there is relatively little is known about the SARS CoV-2 virus and COVID-19.

What do we know so far about the effect of COVID-19 on autoimmune rheumatic diseases?

Dr Venkatachalam: Since the initiation of the project, we have enrolled more than 20,000 patients with arthritis and rheumatic disease in the United States and Canada, and they have shared their experiences and concerns to help us understand how they are affected by this pandemic. We found that 14% of patients showed respiratory illness symptoms, 3% got tested for COVID-19, 1% were diagnosed with COVID-19, and 29% accessed telehealth services. As the study progresses, we will get a more robust understanding of how our patient community is affected by the pandemic, not only in terms of health, but also ability to access healthcare.

What are the roles of the various entities, including clinicians, researchers, and patients, included in the project? How and where can they register to get involved?

Dr Venkatachalam: Multi-stakeholder collaboration in research is of critical importance to ensure that the right research questions are prioritized, the best approaches are used for data collection and analysis, and the knowledge gained is effectively disseminated to those who may need and use this information. When clinicians, patients, and researchers work together, the unique perspectives of all these stakeholders can be brought together to address challenges and propose solutions in collaborative and innovative ways.

The Autoimmune COVID-19 Project does exactly this by focusing on the chronic disease patient experience of the pandemic from different perspectives, some of which include patients articulating concerns around the emerging virus and how these concerns affect behavior related to management their disease; gathering information around barriers and facilitators that patients encounter with regard to testing and access to care; and how this data collectively affects the health and well-being of patients.

In this initiative, we engaged with a multi-stakeholder group right from the start. Unlike a one-time survey, the Autoimmune COVID-19 Project returns to participating respondents across multiple time points because it is especially important for us to understand how the experience of patients change as the knowledge, and subsequently, our response, to this new virus changes, locally and globally.

What does the Autoimmune COVID-19 Project hope to achieve in the long-term for patients with autoimmune disorders and COVID-19?

Dr George: There is a tremendous amount to learn about COVID-19 and its effects on patients with autoimmune conditions. Launching this study as quickly as possible was important so that we can see how attitudes, healthcare access, and treatments change over time among patients with autoimmune and inflammatory or related diseases. We want our analysis to inform the preparedness of patients and clinicians for future pandemics and provide a better understanding about concerns with infection in general among patients with autoimmune disease.

Editor’s Note: To learn more about this initiative, visit and

Disclosures: Dr Venkatachalam and Dr George have declared affiliations with the pharmaceutical industry.


1. Sarzi-Puttini P, Marotto D, Antivalle M, et al. How to handle patients with autoimmune rheumatic and inflammatory bowel diseases in the COVID-19 era: An expert opinion [published online May 5, 2020]. Autoimmun Rev. doi:10.1016/j.autrev.2020.102574

2. Global Healthy Living Foundation launches autoimmune patient COVID-19 research project. News release. BusinessWire. April 22, 2020. Accessed May 15, 2020.