Rheumatoid arthritis (RA) is a chronic, systemic, often disabling autoimmune disease affecting 1% of adults and 2–3% of older adults. A companion inflammatory arthritis, spondyloarthritis (SpA), has a similar prevalence and includes such subtypes as psoriatic arthritis, inflammatory bowel-related arthritis, and ankylosing spondylitis. These debilitating types of arthritis typically strike younger people (median age 30s and 40s)—in the prime of work and family productivity—and are usually lifelong. There are genetic and environmental factors associated with their onset, but there is no known cure. According to the Center for Disease Control, arthritis is the leading cause of disability in the United States. New biologic medications that target specific components of the immune system have proved effective for most patients, with major improvements in quality of life. However, their high cost (~$3,000 per month) and requirement for ongoing use, along with many unresolved safety questions, make inflammatory arthritis a disease focus for comparative effectiveness research (CER). The Institute of Medicine (IOM) put the need to conduct new comparative effectiveness studies of medications for RA and SpA in the highest tier (first quartile) of importance.
In recognition of the importance of filling evidence gaps in inflammatory arthritis-related research, the AR-PoWER will translate our high-impact patient advocacy and education-focused organization into an equally high-impact, patient-centered network able to conduct research, building on an established track record of collaboration between the Creaky Joints patient community and comparative effectiveness researchers and informatics experts who are part of the Agency for Healthcare Research & Quality (AHRQ)-funded UAB Center for Education and Research and Therapeutics (CERTs) of Musculoskeletal Diseases. Additional partners include the American College of Rheumatology (ACR) and Corrona (a doctor-led arthritis research network).
Our goals include: 1) develop sophisticated information technology tools to securely capture our patients’ data; 2) collect informed consent from our membership; 3) map our data to a common data model and exchange encrypted information with other CDRNs and patient-powered research networks (PPRNs), as well as one or more additional external data sources; and 4) establish an expanded governance structure to ensure patient privacy and transparency of research activities, involving data security and Institutional Review Board (IRB) experts.
We will augment our ongoing education and advocacy efforts with a greatly expanded research capacity to conduct comparative effectiveness studies in an area IOM deems of major public health importance. Additionally, we have a well-established mechanism to allow CER results to be disseminated directly from their source to our expansive patient base, as well as through more traditional sources such as peer-reviewed scientific literature. Our patient network, led by arthritis patients and supported by experienced researchers, and effectively leveraging an existing ARHQ-funded infrastructure, will support Patient-Centered Outcomes Research Institute’s (PCORI’s) mission to provide directly to arthritis patients timely information on risks and benefits of treatments.