Beating psoriasis with data

The idea for what is now the Corrona Psoriasis Registry began in the early days of biologics. What did these new drugs mean for psoriasis patients? Were they safe? Effective? What could patients expect in the long run? To answer these questions, health care providers needed data.
Corrona already had a rheumatoid arthritis registry. The dermatologists treating psoriasis patients in that era took the RA registry as their model. “They were answering incredibly important questions with that data,” says Mark Lebwohl, M.D., chair of the Department of Dermatology at the Icahn School of Medicine at Mount Sinai. “For example, if you started on one TNF blocker and failed that one, and then you went to a second TNF blocker, what was the chance of it working? If it didn’t work, was it because of side effects or was it because it just wasn’t effective?”
In April 2015, Corrona debuted the Corrona Psoriasis Registry, a partnership with the National Psoriasis Foundation. The co-scientific directors were Bruce Strober, M.D., and Lebwohl, chairman emeritus of the NPF medical board. Four years later, with Strober and Lebwohl continuing at the helm, the Corrona registry has surpassed 7,700 patients. Hundreds of them are from Mount Sinai. The registry has more than 556 participating dermatology providers (including nurse practitioners and physician assistants) at 236 sites.
Why should you become a registry site? 
Lebwohl cites three main reasons.
Surprisingly, patients don’t see Corrona as just another layer of bureaucracy. “Patients enjoy it,” he says. “We have staff who spend time with our patients, completing the registry questionnaire, asking them how do they feel, have they had any side effects, really drilling down into any problem they have. Patients feel like they get more attention from us.” 
He adds that patient satisfaction scores at Mount Sinai for patients who are in Corrona are “significantly higher” than scores from patients who are not.
Second, Lebwohl cites the financial incentive for the doctor. “You’re paid for every visit when you do a physical exam, and then you have the patient interviewed by a nurse or someone else in the office. You’re getting valuable information about your patient and the patient is happier.” He estimates that the 200 patients in his registry generate $200,000 a year. 
The third and most important reason is the science. “What I say to doctors is not only are you getting paid for it and your patients are happier, but you’re doing something that’s good for the world,” he says. In 10 years, we’re going to know all the good things and areas of concern because we have Corrona, he adds.
Corrona, Lebwohl says, needs dermatologists who treat psoriasis patients to become registry sites, and then to recruit, enroll and follow up with their patients. “Each of these steps may take 15 minutes,” he says, “but the long-term benefit may be immeasurable.”
Corrona Psoriasis Registry requirements for patients:
  • 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)
Get involved 
Write to [email protected] or call 508-408-5415 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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