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First psoriatic arthritis registry in the U.S. to collect both patient and physician data

To improve treatment decisions and patient outcomes for (PsA) – a chronic inflammatory arthritis that affects the joints and tendons – the (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: www.psoriasis.org/about-psoriatic-arthritis.

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 http://www.corrona.org/.

Source

National Psoriasis Foundation (NPF)