The Autoimmune Research Collaborative
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.
Who We Are
Patient Organizations and Academic Institutions
Individual ARC networks are supported and coordinated by patient organizations including Vasculitis Foundation, Accelerated Cure Project, CreakyJoints, Crohn’s & Colitis 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.
Effective Research Collaboration
The ARC collaborates with stakeholders including patients, caregivers, advocacy groups, providers, and funders early on to move research forward more quickly and more efficiently by:
- identifying and prioritizing research questions of high importance.
- developing approaches for using electronic data to address unmet research needs in prevention, diagnosis, treatment, and outcomes of autoimmune and inflammatory conditions.
- promoting and facilitating patient participation in clinical research.
- reduce disparities in access to treatment and participation in research for these diseases.
Created by CreakyJoints® and rheumatology researchers at the University of Alabama at Birmingham (UAB), and supported by a multiyear, multimillion dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions.
IBD Partners is an online research network created by the Crohn’s & Colitis Foundation and the University of North Carolina School of Medicine. We bring together inflammatory bowel disease (IBD) patients and researchers in a revolutionary partnership aimed at optimizing treatment and improving patients’ lives.
iConquerMS™ was launched by the Accelerated Cure Project for MS, a nonprofit organization with proven experience in developing and sharing resources with MS researchers worldwide. Other organizations have partnered with ACP to make the iConquerMS™ vision a reality.
The VPPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis.
This article discusses the shared capacities and challenges of the Patient-Powered Research Networks (PPRNs) model, and the opportunities presented by collaborating across autoimmune conditions to design, conduct, and disseminate patient-centered outcomes research. Click here to read the full article.
In this research article published in The Journal of Rheumatology, George et al, assess the concerns and healthcare-related behaviors of patients with autoimmune rheumatic diseases during the COVID-19 pandemic. Among 1,517 patients with different autoimmune conditions, disease-modifying anti-rheumatic drug (DMARD) use, and geographic measures of urban status, income, education, and COVID-19 activity, the authors found that patients with RA, PsA, AS, and SLE frequently avoided office visits and laboratory testing. Their findings highlight the need for adequate healthcare access and attention to vulnerable populations during the pandemic.
This study, conducted by Banerjee et al for the Vasculitis Patient-Powered Research Network, aimed to assess the concerns and health-related behaviors of patients with vasculitis during the COVID-19 pandemic. Survey responses from 662 patients demonstrated that during the early phases of the COVID-19 pandemic those with vasculitis had high levels of concern and exhibited potentially harmful health-related behaviors.
Throughout the course of the COVID-19 pandemic, assimilating and disseminating information has been challenging. In a recent review published in Current Opinions in Rheumatology, Duron et al evaluated threats to the validity of COVID-19 literature and proposed recommendations for rheumatologists and their patients. The authors note pandemic research exceptionalism and a parallel pandemic of misinformation as specific obstacles to finding high quality COVID-19 literature.
In a recent study, George et al compared the concerns and health-related behaviors of patients with autoimmune rheumatic disease with those who did not have non-autoimmune rheumatic conditions during the COVID-19 pandemic. 7176 patients with an autoimmune disease and 1828 patients without autoimmune diseases were included in this study based on completed surveys and meeting criteria for a primary diagnosis of interest. The authors found that patients with autoimmune rheumatic diseases had more concerns specific to their condition and were less likely to avoid office visits and testing during the COVID-19 pandemic.
The COVID-19 pandemic has had a major impact on healthcare, and the effect on rheumatology patients and providers is still unclear. In a recent study, Watrous et al look to understand the impact of COVID-19 on rheumatology office visits and parenteral immunosuppressive medications. The authors found the impact of COVID-19 on rheumatology office visits volume and immunosuppressive medications to be substantial, concluding that telemedicine and other tech focused healthcare tools are essential to optimizing rheumatology care and outcomes during the pandemic.
Those living with multiple sclerosis (MS) experienced changes in health behaviors and access to care due to the COVID-19 pandemic. However, the extent of the impact of the COVID-19 on this population has not been well characterized. In this cross-sectional survey of adults with MS registered in the iConquerMS platform, Vogel et al found that a majority of participants reported interruptions to their MS related care. Specifically, 64% of the 1,019 survey respondents canceled a medical visit, 22% canceled a neurologist visit, 11% canceled an MRI, 21% canceled a lab test, and 10% changed DMT in some way all due to COVID-19 related concerns or reasons.