The registries, PsoProtect and PsoProtectMe, aim to help health care workers understand how the novel virus affects patients with psoriasis
PsoProtect is an international registry for health care providers to report outcomes of confirmed or suspected COVID-19 in people with psoriasis. The data collected in this registry have the potential to advance the understanding of how such factors as immunomodulator therapies and comorbidities affect outcomes in people with psoriasis who contract COVID-19. PsoProtectMe is a companion registry to collect patient-reported data on the pandemic and psoriasis. PsoProtectMe asks all patients to self-report even if they have not had coronavirus, as the investigators are interested in understanding behavior changes during the pandemic.
The PsoProtect registries are supported by an expert international scientific advisory board and led by an executive team that includes IPC President Jonathan Barker, IPC Councilor Catherine Smith, and researcher Satveer Mahil, all from St John’s Institute of Dermatology, London, United Kingdom; and IPC board member Chris Griffiths, University of Manchester, England, United Kingdom. IPC and 23 other dermatology-focused organizations are partners in the PsoProtect registries project.
IPC interviewed Professor Smith and Dr. Mahil, to get the story behind the founding and launch of these important pandemic resources; for the psoriasis community.
WHAT PROMPTED YOU AND YOUR COLLEAGUES TO START A PATIENT REGISTRY FOR PSORIASIS AND COVID-19?
Catherine Smith: We realized that patients with psoriasis may be at increased risk of contracting and developing a more serious course of COVID-19 because of the multi-morbid burden of psoriasis and the systemic therapies we use to treat the disease. Additionally, anxiety and low mood are a known problem for people with psoriasis. When you consider the impact of social isolation on mental health, people with psoriasis could potentially be very
vulnerable in the pandemic.
In contrast to virtually all other times in medicine, there was a complete absence of information or knowledge on the impact of COVID-19 on people with immune-mediated diseases such as psoriasis. Very early on in the pandemic, I contacted the lead author of one of the first papers published in the New England Journal of Medicine on outcomes of COVID-19 in China. The investigator responded that none of the patients who had died in their study were taking any immunosuppressants or had psoriasis. This was the only information we had on the issue.
This situation in medicine – where patients are asking questions and you have no information to draw on – was (and still is) unprecedented. We set up a call with our group (St. John’s Institute of Dermatology, Guy’s and St. Thomas’s Hospital and University of Manchester) to find the quickest way to obtain information about COVID-19 and psoriasis. PsoProtect came out of these conversations.
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WHAT WAS THE TIMELINE AND PROCESS TO LAUNCH PSOPROTECT AND PSOPROTECTME?
Satveer Mahil: It took us about 6 weeks to set up and launch the registries globally. We started with PsoProtect. A group of scientists, clinicians, epidemiologists, health data researchers, and patient representatives developed the PsoProtect case report form and aligned it with those of other immune-mediated-disease COVID-19 registries. We decided on a minimum core set of variables to include and produced a succinct and easily accessible online case report form that could be quickly completed by busy clinicians during their virtual consultations. We then spread the word: We encouraged clinicians to report any individual with psoriasis under their care with confirmed or suspected COVID-19. We are grateful for the support of IPC and all of our other international partner organizations, which have helped promote and disseminate details of PsoProtect to clinicians all over the world.
CS: PsoProtectMe came about when we realized that only dermatologists were submitting cases to PsoProtect because general practitioners were busy on the front lines of the pandemic. PsoProtectMe would give us a vehicle to collect information directly from patients with psoriasis on their experience
with the virus. The PsoProtectMe data will help us understand how the pandemic impacts people with psoriasis who contracted COVID-19 in terms of mental health, treatment adherence, and of course, their outcomes.
To develop PsoProtectMe, we took the PsoProtect case report form and “translated” it into lay language with help from the Psoriasis Association in the United Kingdom and patients themselves. We enlisted the help of Professor John Weinman, an expert in psychology as applied to medicines at King’s College London, for the questions on adherence. For the topics of jobs and social considerations, we modeled our questions on validated tools used by the World Health Organization (WHO).
HOW DID THIS COMPARE TO LAUNCHING A PATIENT REGISTRY DURING NONPANDEMIC TIMES?
SM: It was much quicker! From inception to launch, it was mere weeks. This accelerated timeline was possible in part because all contributors to the development process (from devising the questionnaires, websites, achieving regulatory approval through to implementation and launch) were incredibly responsive and collaborative. Every single person did their bit.
One of the silver linings to this experience has been a strong sense of community. Many of the links, partnerships, and collaborations forged during this process within the psoriasis community and across immune-mediated diseases will endure. The urgency of the pandemic helped focus and sharpen our decision-making.
WHAT ARE YOUR PLANS FOR ANALYZING THE DATA AND FUTURE RESEARCH?
SM: We have produced aggregated data summaries as the registries have gathered more information and have shared these on the “current data” pages of the PsoProtect and PsoProtectMe websites. Our first in-depth analysis of the PsoProtect data is focused around identifying the factors associated with hospitalization for COVID-19 in individuals with psoriasis. We are using information in PsoProtectMe to explore the potential impact of risk-mitigating behaviors (such as social isolation) in people with psoriasis.
CS: Following this first analysis, we will continue to interrogate the clinical dataset. As cases accrue, so will the power of the data. In the medium term, we are planning to link our data with population-based datasets from the United Kingdom. This means we will be able to determine how representative our findings are. We also hope that the platform we’ve developed, perhaps particularly for PsoProtectMe, will be important for understanding the impact of COVID-19 and associated lifestyle changes in the longer term. Some of the lessons and findings gleaned from the pandemic will be generalizable. For example, how people perceive their psoriasis and their willingness to take medicines. The global reach of the registry – especially with the translations now online in Spanish, French, Portuguese, Italian, Japanese, Polish, and Chinese – provides us with the opportunity to understand more about psoriasis across the world.
To learn more about PsoProtect and submit a case, visit psoprotectme.org. Here you can also explore preliminary data in aggregate and find a list of participating organizations, including the International Psoriasis Council. Individuals with psoriasis can report their experiences in the pandemic (whether or not they have had symptoms of COVID-19) at psoprotectme.org.