Gathering the Data

| Matt Werbach

The refrain has become all too common: There aren’t enough data; we need to know more. Yet each moment of each day that passes during the COVID-19 pandemic, patients reach out to their providers for direction, or they call the National Psoriasis Foundation (NPF) looking for answers to questions like: Should I go off my biologic? Am I at higher risk because of my medication? How do I work on solutions with my doctor if I can’t get into the office or leave my home?

What we wouldn’t give for a pause button – a chance to gather information and then inform patients with the latest and most accurate details of the interaction between psoriatic disease and COVID-19. But no pause button exists. So where do we go next, and how quickly can we get it done?

We start at the root of the problem, of course. We need data.

Across the country, providers are taking up the call. In New York, Mark Lebwohl, M.D., chairman of the Kimberly and Eric J. Waldman Department of Dermatology at the Icahn School of Medicine at Mount Sinai, said that a team at Mount Sinai Dermatology has developed a registry that can help answer the questions patients and providers need addressed. 

In North Carolina, at Wake Forest Baptist Health, Steven Feldman, M.D., Ph.D., a dermatologist and skin pathologist, has started a registry and is promoting the effort using NPF MyStudies.

Dr. Lebwohl is the chairman emeritus of the medical board of NPF, while Dr. Feldman is a current medical board member. 

The Corrona Psoriasis Registry, a psoriasis registry with sites across the U.S. and Canada, will be gathering pandemic-related information from the more than 575 dermatologists and 7,500 patients already involved in their registry. NPF is a longtime partner with Corrona.

Internationally, PsoProtect and its patient-facing arm, PsoProtectMe, are working closely with COVID-19 case-reporting registries in other diseases to better understand the impacts of the pandemic. They are also partnering with existing psoriasis registries. NPF is a proud partner with PsoProtect, where providers from around the world can contribute their data, and PsoProtectMe, where patients can self-report. To date, PsoProtect has released some early information, though the U.S. data are not yet available.

“While our understanding of psoriatic disease and the available treatments has dramatically increased over the past years, the importance of having data related to COVID-19 cannot be overstated,” says Stacie Bell, Ph.D., the chief scientific and medical officer for NPF. “NPF is pleased to be a partner in these tremendous efforts during this unprecedented time.”

As these and other data collection efforts continue, the pandemic carries on. Actionable information is never easy to come by, and the uncertainly of moments like this can be incredibly hard on providers and patients alike. For now, perhaps one of the most important steps that can be taken is to contribute to these registries. If we need the data to address these vitally important questions, then we had better get to gathering.

NPF Pandemic-Related Recommendations

Because of the perpetually evolving situations regarding the pandemic, NPF has created a COVID-19 task force, which among other things, will work to keep "NPF COVID-19 Task Force Recommendations for Patients with Psoriatic Disease" current and appropriate.

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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