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Jessica Daitch
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Email: jdaitch@ghlf.org
CreakyJoints, Major U.S. Research Institutions and Partner Patient Registries Will Study the COVID-19 Related Concerns and Behaviors of Patients with Autoimmune and Related Conditions
UPPER NYACK, NY (April 22, 2020) – Today the Global Healthy Living Foundation (GHLF) and CreakyJoints®, its digital patient community for people with all forms of arthritis, announced the launch of the Autoimmune COVID-19 Project. This is a new longitudinal study for patients with multiple sclerosis (MS), arthritis, Crohn’s and colitis, and vasculitis and will track the evolving impact of COVID-19 on patients living with these conditions. The Project is being led by CreakyJoints and implemented via its 30,000-member ArthritisPower® Research Registry in partnership with three other patient groups, IBD Partners, iConquerMS™, and the Vasculitis Patient-Powered Research Network. All four, including ArthritisPower, are known collectively as the Autoimmune Research Collaborative (ARC), a group initially formed with funding support from the Patient-Centered Outcomes Research Institute (PCORI).
Unlike a single-survey patient study managed by doctors and researchers, the Autoimmune COVID-19 Project will continually examine the concerns and behaviors of patients during the pandemic, collecting information about respiratory illness and testing, to build a picture of COVID-19’s impact on them over time. Expanding on an existing NIH-funded project, the patient-powered, IRB-approved study is being conducted in both English and Spanish in a way that 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 co-principal 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, M.D., 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.”
Patient-Centered Research Experience Will Yield Rapid Results
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. Notably, ArthritisPower, a patient-powered research network launched by CreakyJoints and collaborating researchers at the University of Alabama at Birmingham five years ago, has published research findings in a number of peer-reviewed journals and presented at U.S. and international medical meetings.
Data collected in this study by ArthritisPower, along with collaborating research partners in other disease states, will be aggregated and analyzed to describe the experiences, perceptions and concerns of patient respondents across conditions. 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 personal electronic health record.
“CreakyJoints and partnering patient and rheumatology organizations will use well-established educational channels to disseminate findings to the patient community, such as via our free Patient Support Program, 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.”
CreakyJoints and ArthritisPower will partner and collaborate with other U.S. and Canadian patient groups to increase long-term participation in the Autoimmune COVID-19 Project. An associated patient-facing website, AutoimmuneCOVID.org, 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 via email, social media, through a patient portal 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.
The Autoimmune Research Collaborative (ARC) advances patient-centered outcomes research, and comparative effectiveness and pragmatic research, in autoimmune and systemic inflammatory diseases. ARC, formerly known as the Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG), initially formed within PCORnet®, the National Patient-Centered Clinical Research Network. ARC is comprised of four Patient-Powered Research Networks (PPRNs) working together to conduct patient-centered research in adult autoimmune conditions: the ArthritisPower® Research Registry, IBD Partners, iConquerMS™ and the Vasculitis Patient-Powered Research Network. Each was formerly a Network Partner in PCORnet® and their past participation in PCORnet was supported through Patient-Centered Outcomes Research Institute funding awards. Individual ARC networks are supported and coordinated by patient organizations including Accelerated Cure Project, CreakyJoints, Crohn’s & Colitis Foundation, 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.
The Global Healthy Living Foundation is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for people living with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the digital arthritis community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through ArthritisPower® (ArthritisPower.org), the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions. GHLF also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. Visit www.GHLF.org for more information.
