Group working to expand data available about psoriasis outcomes

Data on the causes of psoriasis and the comparative success of its treatments are lacking, so an international group of stakeholders has organized an initiative to gather more information on the disease. The progress of these efforts and other issues related to the treatment of psoriasis will be explored in an Annual Meeting education session March 24.

“We need outcome measures that are useful in clinic settings and satisfy the needs not only of physicians and regulators, but also payers and patients,” said Alice B. Gottlieb, MD, PhD, director of “Research Gaps in Psoriasis: Opportunities for Future Studies and Development of New Outcome Measures for Clinical Trials” (F156).

“The current outcome measures we have may not be helpful in distinguishing which drugs add value. Too often dermatologic issues are viewed by payers and regulators as largely a cosmetic problem and not of equal severity to other problems. This is due in part to the fact that outcome measures do not take into account all aspects of the disease,” said Dr. Gottlieb, founder and chairman of the board of the International Dermatology Outcomes Measures (IDEOM) committee that has been organized to address these issues.

The lack of data for psoriasis is a common problem for dermatologic diseases because outcome measures from clinical trials fall short on several levels, said Dr. Gottlieb, chair and dermatologist in chief at Tufts Medical Center and Harvey B. Ansell professor of dermatology at Tufts University School of Medicine, Boston.

“The data lack aspects of discrimination and usability, and they are not the same from study to study,” she said. “They might meet the needs of clinical researchers and regulators, but often do not address the needs of patients or payers. Patients often are not even asked about their input into these outcome measures.”

Among the factors that need to be measured are quality of life, metabolic syndrome, cardiovascular morbidity and mortality, cost efficacy, and psoriatic arthritis. To jump-start the efforts of IDEOM, stakeholders followed a model established for rheumatology research — OMERACT (Outcome Measures in Rheumatoid Arthritis).

“IDEOM is based on the OMERACT model, but it takes it one step further,” she said. “Patients have significant input into the design of outcomes measures from the onset and, in addition, its aim is to make clinically useful outcome measures that can be easily generated and entered into EMRs that can be probed by stakeholders, such as payers, so we can demonstrate the worth of dermatologists and our treatments,” Dr. Gottlieb said.

Among the stakeholders for IDEOM are dermatologists, rheumatologists, the pharmaceutical industry, OMERACT mentors, payers, patients, the National Psoriasis Foundation, the AAD, and members of the International Psoriasis Council.

During the March 24 session, Dr. Gottlieb will join six other faculty members to discuss the importance of outcomes measures and the goals of IDEOM as well as psoriasis research and treatment topics, including genetics, pathophysiology, comorbidities, patient subpopulations, systemic therapy, phototherapy, and the effects of health care economics.

“The need for outcomes data that are practical to use in community practice and satisfy the needs of all stakeholders is urgent because payers in the United States are demanding them,” Dr. Gottlieb said.

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