First nonprofit psoriasis registry may improve treatments and outcomes for nation's most common autoimmune disease
PORTLAND, Ore. (January 8, 2014)—To advance understanding of psoriasis—the most common autoimmune disease in the country, affecting up to 7.5 million Americans—and help scientists and clinicians improve treatments and patient outcomes, the National Psoriasis Foundation (NPF) and the Consortium of Rheumatology Researchers of North America, Inc. (CORRONA) will create the first psoriasis registry co-developed and co-administered by a nonprofit.
By collecting, analyzing and disseminating data from thousands of people with psoriasis, the registry will help clinicians, researchers and the pharmaceutical industry study the comparative effectiveness and safety of psoriasis therapies. Data will be gathered through comprehensive questionnaires completed by patients at their dermatology appointments. It will then be made available to interested academic institutions and pharmaceutical companies to study.
"As a dermatologist treating many people with psoriasis, I am excited there will be a resource to help learn what treatments work best, what complications to anticipate from the condition or its treatments and how to best to manage them," said Dr. Mark Lebwohl, chair of the National Psoriasis Foundation Medical Board. "This registry will give researchers much-needed insight into aspects of psoriasis that will help physicians improve patient care. Ultimately, the patients will benefit."
A disabling and disfiguring autoimmune disease that appears on the skin, psoriasis increases people's risk for heart disease, diabetes, heart attack, stroke, obesity and depression. Up to 30 percent of people with psoriasis develop psoriatic arthritis, an inflammatory joint and tendon disease.
In addition to studying treatment safety and effectiveness, the NPF and CORRONA registry will help identify possible causes of psoriasis, examine the relationship between psoriasis and other health conditions, study the impact of the disease on quality of life and other outcomes.
"We are excited by our collaboration with the National Psoriasis Foundation. It is the goal of this partnership to derive patient data that will make their lives easier. The combination of CORRONA's big data expertise in collecting data at the time of the clinical encounter and the world-renowned psoriasis experts at the NPF is sure to result in good things for people affected by psoriasis," said Dr. Joel Kremer, president and chief executive officer of CORRONA.
To learn more about the registry and how you can participate, visit www.corrona.org.
The Consortium of Rheumatology Researchers of North America, Inc. (CORRONA) was founded in 2000 by leading rheumatologists dedicated to advancing and improving the care of patients with rheumatic and other chronic diseases. CORRONA's mission is to advance medical research and improve the quality of patient care. CORRONA is an independent registry without any ownership links to the pharmaceutical industry. It is run by a group of academic and clinical researchers throughout the country. Learn more at www.corrona.org.
About the National Psoriasis Foundation
Over the last 50 years, the National Psoriasis Foundation (NPF) has become the world’s leading nonprofit patient advocacy organization fighting for individuals with psoriasis and psoriatic arthritis. NPF leads this fight by driving efforts for a cure and improving the lives of the more than 8 million Americans affected by this chronic disease. To date, NPF has funded more than $15 million in research grants and fellowships, and to commemorate 50 years, NPF plans to raise an additional $2 million for early scientific career research programs in 2017 alone. Each year, NPF strives to support, educate and advocate on behalf of more individuals living with or caring for someone with the disease than ever before. As part of that effort, NPF established the Patient Navigation Center to offer personalized assistance to everyone with psoriasis or psoriatic arthritis. Join our community today and help drive discovery and create community for all living with psoriatic disease.