Advancing the cause of science, one patient at a time

| Steve Bieler
If we’re ever going to beat psoriasis, we’ll need massive amounts of patient data. Collecting that data is the goal of the Corrona Psoriasis Registry, sponsored by Corrona LLC in collaboration with the National Psoriasis Foundation (NPF). 
 
The Corrona registry, the largest independent psoriasis registry in the U.S., gathers information from patients with psoriasis to track their health and response to treatment. The registry now has more than 230 participating dermatology health care providers (including doctors in private practice, hospitals and research centers).
 
“The primary objective of the registry is to study the safety of FDA-approved systemic therapies,” said Corrona Franchise Director Stacey Hirata Holmgren. “The secondary objective is to study comparative effectiveness, including patient-reported outcomes.”
 
Aren’t we already pursuing these objectives through clinical studies? According to Dr. Bruce Strober, Corrona Psoriasis Registry co-scientific director (with NPF Medical Board chairman emeritus Dr. Mark Lebwohl), the answer is yes – with some significant caveats.
 
“Clinical trials are extremely informative for studying the effectiveness of new medications and somewhat informative for studying their safety,” Strober explained. “However, clinical trials don’t explore real-world settings. They are more rigorous than realistic.
 
“The population of patients in a clinical study might be ‘cleaner’ than in the real world, with no other drugs or comorbidities. For example, no concomitant heart disease or a malignancy. Comorbidities might excuse you from the study.”
 
The patients in the Corrona Psoriasis Registry represent that real-world population. These are the only requirements for potential registrants:
  • Must be diagnosed with psoriasis
  • Must be 18 or older
  • Must have started a new biologic within the past 12 months (combination therapy – for example, a biologic with a topical steroid – will not disqualify a patient)
Patients and their dermatologists complete questionnaires during regular office visits. Doctors are compensated for the data collected at each visit, and each patient receives a gift card for participating.

The uncrowned King of Corrona

Dr. Jerry Bagel of Windsor Dermatology in East Windsor, New Jersey, believes in patient registries. He worked with Amgen, Abbvie and Janssen to find patients for their registries. But he has gone above and beyond for Corrona. In June 2017, the Corrona registry logged its 3,000th patient. Windsor Dermatology was one of the first sites on board when the registry launched in April 2015, and has enrolled more patients to date than any other site. More than 10 percent of them came from Windsor Dermatology. 
 
Bagel lists three reasons for his participation with Corrona. “One, it’s really good science,” he said. “Two, we make this part of our strategy for treating patients. We bring them back at six months and check on adverse events. This also gives us the chance to check on compliance. Three, there’s the economic gain.”
 
The secret to Bagel’s success is straightforward. “In order to do the registry right, you should delegate it to someone else,” he said. “The Corrona registry takes about 15 minutes of patient time and about 20 minutes of data-entry time. What you don’t want to do is take away from helping-your-patients time.
 
“If you’re considering Corrona, you should ask yourself, how many psoriasis patients do you see? How many biological agents do you prescribe?” he advised. “We’re vested in Corrona because we’re vested in psoriasis.”

A more intelligent use of psoriasis treatments

“The Corrona dataset can revolutionize the way psoriasis is treated. But it can only be as strong as the data that go into it,” Lebwohl wrote in the Summer 2017 Journal of Psoriasis and Psoriatic Arthritis.
 
“That’s why we need you – the dermatologist treating psoriasis patients every day – to become a registry site, and once you are a site, to recruit, enroll and follow up with your patients. Each of these steps make take 15 minutes, but the long-term benefit may be immeasurable.”
 
“By signing up to recruit patients for the registry, you won’t just be part of the assessment of these drugs,” Strober said. “You’ll be part of the endeavor to better understand and more intelligently use them.”
 
Write to psoriasis@corrona.org for more information on the Corrona Psoriasis Registry.
 
 

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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