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The PsoProtect Me survey.

The PsoProtectMe survey, launched in May 2020, is designed to help understand these changes first-hand. This survey was designed by a study group of clinicians, scientists and patient representatives, and is supported by an expert international scientific advisory board and multiple international professional and patient organizations, including the Global Psoriasis Atlas.

The PsoProtectMe survey (psoprotectme.org) is for anyone with psoriasis to complete, whether or not you have had COVID-19. The survey seeks to understand your experiences and behaviours during the pandemic. If you have had COVID-19, the survey also captures how this has affected you, including your symptoms and whether you have fully recovered. It takes approximately 10 minutes to complete and is available in eight different languages.  

Since its launch, more than 2500 people with psoriasis from all over the world have now completed the PsoProtectMe survey, and the team behind the project have released a summary of some of the data gathered so far on their website (psoprotectme.org/current-data).

Out of the first 2000 people to complete the survey, approximately two thirds are female, a third are on injection medication, and almost half report that their psoriasis severity has remained the same during the pandemic. 6% of people have had suspected or confirmed COVID-19. The PsoProtect team are actively analysing the data as it comes in to try and understand differences between people in terms of how they have responded to the pandemic, and whether there are any factors that make them especially vulnerable. However, it is important that people continue to participate - the more data available, the more precise the conclusions will be.

There is still time to complete the survey, and it is important that everyone with psoriasis (of any age or background, and no matter what other health conditions you may have or treatments you may be taking) adds their voice. It is really important that the information collected is representative of everyone with psoriasis. This includes people who have psoriatic arthritis as well as psoriasis. 

A companion global registry called PsoProtect, has also been established for healthcare professionals to report outcomes of confirmed or suspected COVID-19 in people with psoriasis (psoprotect.org). In fact, if you have psoriasis and think you may have had COVID-19, please encourage your dermatologist to fill out a PsoProtect case report form about your experience to allow analysis of both your perspective and your doctor’s perspective.  It is hoped that all the information collected in PsoProtect will advance understanding of how factors such as psoriasis treatments and underlying health conditions affect outcomes in people with psoriasis who contract COVID-19.

The PsoProtect Team are committed to publishing and disseminating their findings to ensure that healthcare professionals and society as a whole can learn from this experience to enable them to help support people with psoriasis for the future.

 

Thank you for your valuable contribution and support so far – please do help to spread the word via @PsoProtect on TwitterFacebook and Instagram.