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
The Autoimmune Research Collaborative (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.
Patient Organizations and Academic Institutions
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. 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.
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
- Reducing disparities in access to treatment and participation in research for these diseases
ARC Collaborators
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.