Frequently
asked questions.

PsoProtectMe is an online survey for people with psoriasis. It is a “self-report” survey for you to complete.

COVID-19 is a new infection so we need to find out how it affects people with psoriasis and whether the treatments we use for psoriasis increase (or decrease) the risk of severe infection. This survey will help answer these important questions.  Other teams are asking people with other important inflammatory conditions, such as eczema and arthritis, similar questions. We are all working together to share and make the best use of the information.

Anyone with psoriasis from any country in the world can take part. If you are unable to complete the survey yourself, someone else can complete it on your behalf.

Please complete the online survey, which is found here. Please only complete the survey once.

If you have suffered from COVID-19, then complete the survey at least 2 weeks after your first symptoms.

We are collecting information about:

• You and your psoriasis, including any treatments that you are using.
• Whether you have suffered from COVID-19 and how COVID-19 has affected you.

We will be collecting your information through a secure website. We do not collect any personally identifiable information. The information that we do collect from you is stored safely and protected so that you remain anonymous in accordance with General Data Protection Regulation (GDPR). The information is stored securely at the NIHR Biomedical Research Centre at Guy’s and St Thomas’ NHS Foundation Trust, UK.

The study team will analyze the information and it will only be used for the purposes of scientific and medical research in the public interest. Sharing information with researchers will always be under relevant data protection and information governance regulations. Your information will not be used for commercial purposes. PsoProtectMe is a not-for-profit initiative.

The survey has been formally approved by an independent ethical review board (Yorkshire & The Humber – Leeds West Research Ethics Committee; REC reference 20/YH/0135).

You have the right to have your information removed from our survey at any time. Please contact us to let us know that you do not wish your information to be included. You will need to provide your PsoProtectMe reference number so that we can find your information in the database and we will then ensure that your information is removed. You also have the right to raise concerns or make a complaint by contacting us.

PsoProtectMe is a survey that is completed by people with psoriasis. PsoProtect is completed by healthcare professionals only. The two initiatives are complementary to each other.

Yes, we are working closely with existing registries that monitor the long term safety of treatments for psoriasis to support the timely and detailed reporting of cases of COVID-19. We are also working together with case reporting registries  of COVID-19 in other important inflammatory conditions such as eczema and arthritis. We hope that this will help us to better understand how COVID-19 affects people with different  diseases and help doctors make decisions about treatments.

Yes, please still complete the PsoProtectMe survey. Your information will help us find out how your psoriasis has been affected in the pandemic.

Yes, please inform your dermatologist that you have completed the survey.

If you are unclear about how to answer any questions, please contact us.

Yes, the survey is only available online here. No paper versions are available.

PsoProtectMe was designed by doctors and scientists at St John’s Institute of Dermatology, Guy’s and St Thomas’ Hospital London and the Dermatology Centre, University of Manchester, UK in collaboration with the Psoriasis Association (UK). PsoProtectMe is supported by global professional and patient organizations and an expert international oversight committee.

If you live in the UK, the information you provide in the survey will be even more valuable if you give us permission to link your data with additional data sources including NHS, UK Public Health organisations and Homecare companies (who provide biologic/injection treatments). To do this, we need to collect your date of birth, NHS number, name and postcode. If you do not know your NHS number, we can use your name, date of birth and postcode to find it.

We will ask for your consent to collect this extra information. We will ask you to provide an electronic signature (‘e-consent’) within the online survey. If you would prefer to provide a wet signature (i.e. physically sign a piece of paper), then please download and print a copy of the consent form here, sign it and return it to us by email or post.

We will also ask you to take photos of your skin using your phone (according to our self-photography protocol) and upload the photos to our secure database. We will use the photos to assess the severity of your psoriasis. This will help us to understand how environmental changes during the pandemic are impacting on psoriasis. We will also use the photographs to develop accurate methods to assess psoriasis severity, which do not rely on face-to-face review with your healthcare team.

Your confidential information will be stored safely and protected in accordance with General Data Protection Regulation (GDPR) in our secure database. None of your confidential information will ever be made public and it will only used for the purposes of scientific and medical research in the public interest, in accordance with our ethical approval (REC ref 20/YH/0135).

It really helps us if you can provide your confidential information, but it’s not essential. You can still participate in the survey if you do not provide this information. You have the right to have your confidential information removed from the survey at any time – please contact us at psoprotect@kcl.ac.uk.

Yes, early in the questionnaire you will be asked ‘Is this the first time you have completed this survey?’. Please select ‘No’. You will then see ‘Please only submit one survey per person. Have you made a mistake or want to update your previous submission?’. Please select ‘Yes’ and enter your previous survey reference (if you know it) and then you can complete the form in full again adding any new information. On completion you will receive a new survey reference number – please keep this safe in case you need to make any more changes in the future.

Resources on COVID-19 and psoriasis can be found on the Psoriasis Association and International Psoriasis Council (IPC) websites, which are regularly updated.