SECURE-AD Patient Survey FAQ

Thank you for taking the time to read this page. The SECURE-AD Patients survey team is very grateful for any support you feel able to give to this study. Our hope is that with your help, the care available to patients with atopic dermatitis in the COVID-19 pandemic can be improved.

The SECURE-AD Patient survey is an online survey for people with atopic dermatitis (also called atopic eczema) from all over the world who have been diagnosed with COVID-19 or think they have had COVID-19 infection.
COVID-19 is a new infection so we need to find out how it affects people with atopic dermatitis and whether the treatments we use for atopic dermatitis increase (or decrease) the risk of severe infection. This survey will help answer these important questions. Other research teams are asking people with other inflammatory conditions, such as psoriasis and rheumatic diseases, similar questions. We are all working together to share and make the best use of the information.
Anyone with atopic dermatitis from any country in the world can take part, if they have been diagnosed with or think they have had COVID-19 infection. It is however important that your COVID-19 symptoms started at least two weeks ago, so you can share your personal experience with your COVID-infection. If your COVID-19 symptoms started less than two weeks ago, please participate at a later date, because your experiences and information are very valuable. If you are unable to complete the survey yourself, someone else can complete it on your behalf.
At this time, we are gathering information on patients who have had COVID-19 infection (people testing positive on a COVID-19 test or people diagnosed based on their symptoms). At a later point, when the COVID-19 pandemic has passed, we will collect information on patients with atopic dermatitis who never had COVID-19 infection, as there may be differences in who does and does not get COVID-19 infection.
Please complete the online survey, which is found here. It will take about 10 minutes to complete. Please complete the survey only once. If you are unable to complete the survey yourself, maybe someone else can complete it on your behalf.
We are collecting information about:

- You and your atopic dermatitis, including any treatments that you are using.
- How having COVID-19 infection affected you.

The survey is anonymous and no identifiable information about you will be stored. If you live in the United Kingdom, you can provide optional permission for us to link your anonymous survey responses to your NHS and public health records, securely through King’s College London managed encrypted servers. If you prefer not to provide this optional information, your survey will remain completely anonymous.
Your survey information is stored at the NIHR Biomedical Research Centre at Guy’s and St Thomas’ NHS Foundation Trust, UK, using encrypted servers managed by King’s College London. The information that we collect from you is stored securely so that you remain anonymous, in accordance with General Data Protection Regulation (GDPR). If you live in the UK (and provide us with optional permission), we will link your survey responses to information from your health records. If provided, under this additional consent, no personally identifiable data will be published or released publicly. The study team will analyse the information 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. The SECURE-AD Patient survey 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 secureADpatients@gmail.com to let us know that you do not wish your information to be included. You will need to provide your survey 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 secureADpatients@gmail.com.
The patient survey is completed by people with atopic dermatitis themselves. SECURE-AD 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 atopic dermatitis (TREAT). We are also working together with COVID-19 registries for psoriasis (www.psoprotect.org, www.psoprotectme.org), rheumatic diseases (www.rheum-covid.org) and inflammatory bowel diseases (www.covidibd.org).
Yes, please still complete the survey. Your information will help us find out how your atopic dermatitis together with your other health conditions has been affected in this pandemic.
If you can and if applicable, please do inform your dermatologist that you have completed the survey. Please ask your dermatologist to report your case with SECURE-AD for health care professionals.
If you are unclear about how to answer any questions, please contact us secureADpatients@gmail.com.
No, unfortunately, the survey is only available in English. If that is a problem, you may be able to get someone to help you. It is, however, possible to translate the survey by using the Google Chrome web browser. To do this, start the survey and on the opening page, right-click and select ‘Translate to…’
Yes, the survey is only available online here . No paper versions are available.
The SECURE AD Patient survey was designed by an international team of doctors, scientists, researchers and patients. Please see our page on the Steering Group and the International Scientific Advisory Committee.

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