Comprehensive psoriatic arthritis registry will improve understanding of under-treated disease
First U.S. registry to collect both physician and patient data on psoriatic arthritis
PORTLAND, Ore. (April 24, 2014)—To improve treatment decisions and patient outcomes for psoriatic arthritis (PsA)—a chronic inflammatory arthritis that affects the joints and tendons—the National Psoriasis Foundation (NPF) and Corrona, LLC (Corrona) are collaborating to give NPF-affiliated researchers access to Corrona's psoriatic arthritis registry, which is the largest psoriatic arthritis registry in the world.
At least 11 percent of people with psoriasis—the most common autoimmune disease in the country, affecting up to 7.5 million Americans—are currently diagnosed with psoriatic arthritis. According to the Psoriasis Foundation, an estimated 30 percent of people with psoriasis will develop PsA. Learn more about PsA »
The registry collects, analyzes and distributes data from thousands of people with psoriatic arthritis and makes it available to researchers, providers and the pharmaceutical industry to study the comparative effectiveness and safety of treatments.
In addition to treatment comparisons, the registry gathers data on patient demographics, medical history, comorbidities, PsA subtypes such as spondylitis, detailed clinical assessments and patient-reported outcomes. Data is collected through comprehensive questionnaires completed by both health care professionals and patients at exams.
"There's not enough investment being made in psoriatic arthritis research along with a lack of understanding about this condition among both patients and their providers," said Randy Beranek, National Psoriasis Foundation president and CEO. "Having a fuller picture of the disease from patient and clinical data will allow health care providers to improve patient outcomes."
Psoriatic arthritis has a similar impact on quality of life as rheumatoid arthritis (RA). Despite these similarities, there are significantly fewer resources for people with PsA than for those with RA. This registry aims to answer many questions about the burden of psoriatic arthritis on quality of life, as well as severity, unmet needs and the natural history, or progression, of the disease.
"Being able to recognize psoriatic arthritis early, diagnose it properly and treat it effectively are key to preventing joint damage and other impacts that occur when the disease progresses," said Dr. Philip Mease, scientific director of Corrona's registry, director of rheumatology research at Swedish Medical Center and clinical professor at the University of Washington. "Because of its size and comprehensiveness, this registry is a tremendous resource to teach us about PsA as a disease, its impact, comorbidities and the efficacy and safety of treatment in real-life settings."
"Corrona is proud to partner with NPF and help psoriatic arthritis patients. With this new affiliation, Corrona and NPF will collaborate to provide the academic research community with access to data to answer key questions on burden of disease and risks/benefits of approved therapies for psoriatic arthritis patients in the real world," said Dr. Joel Kremer, chief medical officer of Corrona.
Currently, the registry has more than 6,200 psoriatic arthritis patients enrolled. To learn about the registry and how you can participate, visit www.CORRONA.org.
About Corrona, LLC
Corrona, LLC was founded in 2000 by leading rheumatologists dedicated to advancing and improving the care of patients with rheumatic, dermatologic and other chronic diseases. Corrona's mission is to advance medical research and improve the quality of data available for chronic disease research and ultimately patient care. Corrona is an independent research company without any ownership links to the pharmaceutical industry. Learn more at www.corrona.org.
About the National Psoriasis Foundation
Celebrating 50 years of patient support, advocacy, research funding, and education, the National Psoriasis Foundation (NPF) is the world’s leading nonprofit fighting for individuals with psoriasis and psoriatic arthritis. NPF is on a continued mission to drive efforts to cure psoriatic disease and dramatically improve the lives of more than 8 million Americans affected by this chronic immune mediated disease. As part of that effort, in 2016 the NPF created a Patient Navigation Center to offer personalized assistance to everyone with psoriasis or psoriatic arthritis. In addition, the NPF has funded more than $17 million in research grants and fellowships to date. Learn more at www.psoriasis.org.