Psoriasis is a lifelong skin disease that changes over time – some days are worse than others. The mySkin study will uncover the complex relationship between psoriasis and our physical and mental health. This knowledge will help us to understand how to reduce the risks of psoriasis, so that people with psoriasis can live healthier lives for longer.

We are asking for people with psoriasis to regularly enter data about their skin and health into mySkin so that we can build a detailed picture of how psoriasis can change over time, and why. By contributing to mySkin you will help improve scientific understanding and ultimately treatments for people with psoriasis.

Any adult with psoriasis who lives in the UK can take part, whether you have lived with psoriasis for some time or are newly diagnosed. We are keen to hear from everyone, whether you have a small area of skin affected or widespread psoriasis.

You can complete mySkin if you are aged 16 years and over.

Please complete the online survey, which is found here.

We will ask you to create a password before we collect any information. Please keep your password safe. We will ask for your consent to collect information from you. We will ask you to provide an electronic signature (‘e-consent’).

We will ask you to take photos of your skin using your own phone and upload the photos to our secure database. This is optional and does not affect the rest of your participation in the mySkin study.

If you can provide photos, we will use the photos to assess how active your psoriasis is, and to help develop accurate digital skin assessment methods. Your photos will be confidentially uploaded to our secure database. Your photos will be stored safely and protected in accordance with UK General Data Protection Regulation (GDPR) and the Data Protection Act 2018, and used for the purposes of scientific and medical research in accordance with the existing ethical approval of our study. De-identified photos from the study may be published in scientific reports, on the study website, used in clinical presentations and educational materials, and/or in future research.

The information you provide will be even more valuable if you give us permission to link your data with additional health records including NHS, UK Public Health organisations, homecare companies who provide biologic/injection treatments, and other research studies that you may have contributed to. 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.

If you are also taking part in the BSTOP study, we would like your permission for us to access data that you have already given to BSTOP. This way we will not need to ask you twice for the same data.

We will need to use information from you for this study. This information will include your name, date of birth, NHS number, telephone and email contact. People will use this information to do the research or to check your records to make sure that the research is being done properly. People who do not need to know who you are will not be able to see your personal details. Your data will have a code number instead. If you have given permission, your information will be used for the purposes of linkage of your data to relevant datasets held by national providers of healthcare data and to other research studies that you may have contributed to (e.g. the BSTOP study) and, for recall for future studies.

We will keep all information about you safe and secure. King’s College London and Guy’s and St Thomas’ NHS Foundation Trust are the study co-sponsors. They will be using information from you in order to undertake this study and are responsible for looking after your information and using it properly. We will be collecting your information through a secure website. The information that we collect from you is stored safely on secure servers managed by Guy’s and St. Thomas’ NHS Foundation Trust, UK and protected in accordance with UK General Data Protection Regulation (GDPR) and the Data Protection Act 2018. Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study.

Our team collaborate on research throughout the world. By signing the consent form, you are agreeing that your de-identified study data can be shared with research collaborators running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies (e.g. industry partners) involved in health and care research in this country or abroad. They must follow our rules about keeping your information safe. Your information will only be used by organisations and researchers to conduct research in accordance with the Policy Framework for Health and Social Care Research. This information will not identify you and will not be combined with other information in a way that could identify you. The information will only be used for the purpose of healthcare research and cannot be used to contact you or to affect your care. It will not be used to make decisions about future services available to you, such as insurance. Sharing de-identified information with researchers will always be under relevant data protection and information governance regulations. Your information will not be used for commercial purposes. The mySkin study is a not-for-profit initiative.

You can find out more about how we use your information at www.hra.nhs.uk/information-about-patients/, by reading the leaflet at www.hra.nhs.uk/patientdataandresearch/, by asking one of the research team or by sending an email to the Data Protection Officer (Olenka Cogias). Please contact us if you have any questions or would like to find out more.

You have the right to withdraw from participating in the mySkin study at any time without giving a reason. Please contact us to let us know that you do not wish to continue your participation in the mySkin study. After you withdraw from the study, we will not contact you again for follow up surveys. You may also be withdrawn if you lose capacity to consent during the study.

We will keep all information and samples that we have already obtained, but we will not contact you for further studies if you do not want us to.

We are collecting self-taken blood or saliva samples from a subset of people who have participated in the mySkin study. This will help us to build a more detailed picture of the factors that change a person’s risk of psoriasis. We will ask you if you are happy to be contacted in the future for this purpose. This is entirely optional and does not affect the rest of your participation in the mySkin study.

If you can provide a blood sample, we will ask you to collect a finger prick blood test in a small plastic tube. We will use your blood sample to look at your genes (often called “DNA”) and proteins. We can also isolate DNA from saliva, in which case you will be asked to spit 2 ml (half a teaspoon) into a plastic pot. We will use the samples you provide only to look at genes related to psoriasis and other inflammatory disease research. We will not use your DNA for any tests to learn about your risk of developing any other disease. We will post the blood or saliva kit to you. Blood tests can be uncomfortable and cause bruising at the site. The kit will contain full instructions on how to take the sample safely and we will provide a transport pack so that you can return your sample to us. Please contact us if you require further support.

All samples will be stored securely in accordance with the Human Tissue Act and according to national and local NHS Research Governance guidelines and will only be accessible to approved designated members of the research team and used for scientific research. We plan to store your samples securely for as long as this and future studies continue at the main study site (St John’s Institute of Dermatology, Guy’s Hospital, London). With your agreement, we will store your samples for future research in a research biobank at St John’s Institute of Dermatology, Guy’s and St Thomas’ NHS Trust: Ethics Approval Ref: 07/H0712/106; HTA License number 12521 and related data (e.g. name and ID number) on our secure database.

You may have previously provided blood, saliva and/or skin samples for other research studies (e.g. BSTOP). We will use your personal identifiable information (e.g. name, date of birth, NHS number) to link your mySkin data to these existing research studies so that we can build a more complete picture from all of the information that you have provided for research.

If you have a concern about any aspect of this study, please contact our study team, who will do their best to answer your questions.

If you have a complaint, you should contact our study team, who will do their best to answer your questions. If you remain unhappy, you may be able to make a formal complaint through the NHS complaints procedure. Details can be obtained through the Patient Advisory Liaison Service (PALS) (020 7188 3514). In the event that something does go wrong and you are harmed during the research you may have grounds for legal action for compensation against Guy’s and St Thomas’ NHS Foundation Trust and/or King’s College London but you may have to pay your legal costs. This study has been reviewed and given a favourable opinion by the Health and Social Care Research Ethics Committee B (Ref: 22/NI/0193).