CreakyJoints and the Global Healthy Living Foundation collectively launched the Autoimmune COVID-19 Project, a longitudinal study with the goal of assessing the impact of COVID-19 on patients with multiple sclerosis (MS), arthritis, Crohn’s and colitis, and vasculitis. DocWire News recently interviewed study lead Shilpa Venkatachalam, PhD, associate director of Patient-Centered Research at CreakyJoints and co-principal investigator of ArthritisPower, about the study’s inception, its goals, and more.
DocWire News: Describe the mission of the Autoimmune COVID-19 Project.
Dr. Venkatachalam: The mission of the Autoimmune COVID-19 Project to understand the impact of COVID-19 on chronic disease patients with autoimmune, rheumatic, and related conditions (multiple sclerosis, inflammatory bowel disease, and vasculitis). At CreakyJoints, our portion of the study will be administered via our ArthritisPower Research Registry (available at https://rheumcovid19project.org/) Over time, we are asking patients about their respiratory illness symptoms, the choices they are making about immunosuppressive treatments, experiences with COVID-19 testing and modified doctor visits using telehealth, and their preferred sources of information about COVID-19. Thus, this study may ultimately facilitate optimization of patient support and shared decision making about the management and treatment of autoimmune and related diseases in the context of an infectious disease pandemic.-19.
DocWire News: Where did the idea for the Project arise from?
Dr. Venkatachalam: One of the main commitments behind patient-centered research is to generate evidence-based knowledge that can help physicians and patients to manage their health collaboratively in order to achieve better outcomes. With the launch of this project, CreakyJoints builds on our expertise in rapidly developing infrastructure for studies, particularly via our ArthritisPower Research Registry, which launched five years ago as part of a collaboration with the researchers and clinicians at the University of Alabama at Birmingham (UAB). Since then, we’ve gained significant experience designing, implementing, analyzing, and presenting or publishing our study results, which focus on topics ranging from patient preferences, knowledge and concerns to challenges or barriers patients face in their disease journey from diagnosis to managing their rheumatic disease and related conditions. Many of our studies are conducted in collaboration with other Patient-Powered Research Networks (PPRNs) and major U.S. research institutions including academic institutions, hospitals and healthcare organizations. Therefore, we had the relationships and structures in place to quickly put together this collaborative research project.
DocWire News: Who is involved in data collection?
Dr. Venkatachalam: This study is a collaboration between the Global Healthy Living Foundation (GHLF) and partnering autoimmune patient research networks from the Autoimmune Research Collaborative (ARC). ARC is comprised of four Patient-Powered Research Networks (PPRNs) working together to conduct patient-centered outcomes research, and comparative effectiveness and pragmatic research, in autoimmune and systemic inflammatory diseases: the ArthritisPower® Research Registry, IBD Partners, iConquerMS™ and the Vasculitis Patient-Powered Research Network. Individual ARC networks are supported and coordinated by patient organizations including CreakyJoints, Crohn’s & Colitis Foundation, Accelerated Cure Project, the Vasculitis Foundation, and affiliated academic institutions including the University of Alabama at Birmingham, the University of North Carolina at Chapel Hill and the University of Pennsylvania. We are also collaborating with other U.S. and Canadian patient groups for this study.
DocWire News: How are data collected (electronically, phone, etc.)?
Dr. Venkatachalam: All data is collected electronically via patient-powered registries and patient organizations. These data will be aggregated and analyzed to describe the experiences, perceptions and concerns of patient respondents across conditions. Data collected will also be shared with patient participants via an associated patient-facing website, AutoimmuneCOVID.org. The webpage will display summaries of results and direct patients to credible information and updates. As the study proceeds, the website will also feature a U.S./Canada map displaying where people with autoimmune, rheumatic and related conditions have reported respiratory illness (COVID-19 or other, whether or not confirmed with testing) using geolocation data shared by patients.
The longitudinal, observational cohort study will recruit patients from the U.S. and Canada via email, social media, and other sources such as online patient registries like ArthritisPower and similar networks that are part of the Autoimmune Research Collaborative, including the Vasculitis Patient-Powered Research Network (VPPRN), Inflammatory Bowel Disease Partners (IBD Partners) and iConquerMS.
DocWire News: What information in particular is of interest for the project?
Dr. Venkatachalam: First, this is a patient-facing study. That means we will learn a great deal about the impact of COVID-19 on people who are living with underlying chronic disease (autoimmune, rheumatic and musculoskeletal and inflammatory diseases), whether it has to do with their concerns around this emerging virus or how it impacts behavior related to management of their disease. We’ll learn about testing and the barriers patients may be facing.
Our Autoimmune COVID-19 Project differentiates itself from other single-survey studies by asking respondents to participate at multiple time points so that we can get a more complete picture of how the concerns and behaviors of patients, and the pandemic’s impact on them, may change over time.
It’s also important to note we are continually sharing what we are learning back with patient communities, and also with clinicians and researchers, so everyone can better understand the impact this virus in having on the lives of patients. On our affiliated website, we also have other resources and opportunities, such as webinars with health experts, a Patient Support Program and new articles posted daily about the topics of interest to patients. The ultimate goal is always to share knowledge, increase awareness and use knowledge in a way that can help patients make informed decisions with their clinicians to ensure better health outcomes
DocWire News: What are the long-term goals of the Autoimmune COVID-19 Project?
Dr. Venkatachalam: Because this is an emerging virus, we will learn much over time. There is the potential that our evolving understanding of COVID-19 will benefit future patients with autoimmune and inflammatory or related diseases and help us address the current exigencies of a highly transmissible disease, but also help prepare patients and clinicians for future pandemics.
In addition, this study will also help us understand the current number of patients with autoimmune conditions being tested for COVID-19 and the number of patients diagnosed with COVID-19. Over time, we will have a more complete picture of the many different ways in which COVID-19 affects these patients.
DocWire News: Any other information/comments that would be of interest or value to readers?
Dr. Venkatachalam: We recommend visiting https://autoimmunecovid.org/ to learn more about the Autoimmune COVID-19 Project and https://rheumcovid19project.org/ to learn more about the related ArthritisPower study on autoimmune, rheumatic, and related conditions. In addition, the Global Healthy Living Foundation, which is the parent organization of CreakyJoints, offers a free patient support program that is tailored for people managing a wide range of chronic diseases, available at www.ghlf.org.