mySkin Logo has been created by the doctors and scientists of St John’s Institute of Dermatology at Guy’s Hospital, King’s College London.

We’re here to understand how psoriasis changes over time, and why. By telling us about your skin and how you feel, you can help to improve health and treatments for people with psoriasis.

We’re asking everyone with psoriasis to complete the mySkin survey. We are keen to hear from you, no matter what type of psoriasis you have, how long you have had it, or the areas of skin involved.

The survey takes about 10 minutes to complete. We ask about your skin, treatments you have had, and about your physical health and mental wellbeing. We also ask you for updates on your progress every 3 months. You can learn about how we will be using your data here.

We plan to uncover the complex relationship between psoriasis and our physical and mental health. This knowledge will help us understand how to reduce the risks of psoriasis, so that people with psoriasis can live healthier lives for longer.

You can complete the mySkin survey at any time.

By contributing to mySkin you will help improve scientific understanding and ultimately treatments for people with psoriasis.

Thank you

Your Questions We hope any questions you have about the survey, our work, or the data we collect are answered here. If not, please get in touch.

mySkin is an online survey for people with psoriasis who live in the UK. It takes about 10 minutes to complete. We will ask you to log your progress in shorter follow up surveys every 3 months for 1 year.

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 are collecting information about you and your psoriasis, including any treatments that you are using. We will ask about your physical health, mental wellbeing and everyday behaviours such as your diet and physical activity.

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.

Yes, providing photos is optional and does not affect the rest of your participation in the mySkin study.

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 invite you to log your progress in short follow up surveys every 3 months for 1 year. We will ask you to tell us about your skin and how you feel, including any changes to your health. You will need to enter your email address and password before you can enter this information.

We will ask for your phone number and email address so that we can let you know when to complete a follow up survey.

It really helps us if you can regularly log your progress in follow up surveys every 3 months so that we can build a detailed picture of how psoriasis can change over time, and why. If you have missed a follow up survey, please complete it as soon as you are able to.

You can ask for your password to be emailed to you by contacting us. Please contact us if you require further support.

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.

Yes, you can view a summary of information from everyone who has completed mySkin online. This summary is freely available to everyone, and you do not need to log in to view it.

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.

Yes, please still complete mySkin. By telling us about your skin and how you feel, you will providing valuable information for research into psoriasis. Your information will help us 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 over the long term and ultimately improve treatments for people with psoriasis.

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.

Please contact us if you would like to let us know about a new health update or have any questions.

Yes, we would like to hear from you if your skin has worsened. Please contact us and we will send you a flare follow up survey. Following this submission, we will invite you to submit short weekly follow up surveys for the next 4 weeks so that we can build a complete picture of how psoriasis affects physical health, mental wellbeing and quality of life. We will not be informing your medical team - please contact your medical team if you need help with your skin treatment.

The study is currently running in the UK. Please email us to join our contact list so that we can let you know about other opportunities to contribute to psoriasis research.

Yes, you can inform anyone that you are taking part in the mySkin study, including your dermatologist.

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.

The mySkin team is a group of doctors and scientists at St John’s Institute of Dermatology at Guy’s Hospital, King’s College London, and patient representatives from the Psoriasis Association. We co-designed mySkin with patients and professionals involved in the care of people with psoriasis. We collaborate with patient and professional organisations and leading researchers globally, so that our research can rapidly advance scientific understanding and improve healthcare, for the benefit of people with psoriasis.

We receive funding from a number of sources including the National Institute for Health and Care Research and the Psoriasis Association.

Once we have finished the study, we will keep some of the data so we can check the results. We aim to publish the results in scientific journals and will publicise our findings via our website, research partners (e.g. Psoriasis Association), in patient information leaflets and on request. We will write our reports in a way that no-one can work out that you took part in the study. Please visit our page ‘Discoveries & Publications’ online for updates.

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).

Discoveries and Publications We are committed to sharing data and are delighted to provide open access to summary information from mySkin.

756

mySkin participants to date

The summary data below are preliminary so should not be used to inform clinical decisions.

Updated on 1st June 2024

Research publications

Many of the discoveries our team made during Covid may be relevant to the post pandemic era. For example, we found that early in the pandemic, people with psoriasis experienced flares in their psoriasis, and were very concerned about the effects of medicines on their immune system. Our research paper can be found here, and a summary is on the Psoriasis Association website here. In mySkin we will be exploring more about the impact of mental wellbeing and how this can influence psoriasis (and vice versa).

Other recent research papers include:

Our Team The mySkin team is a group of doctors and scientists from St John’s Institute of Dermatology at Guy’s Hospital, King’s College London, and patient representatives from the Psoriasis Association. We co-designed mySkin with patients and professionals involved in the care of people with psoriasis.

About Us

Satveer Mahil

Dr Satveer Mahil

Reader and Consultant Dermatologist at St John's Institute of Dermatology, Guy’s & St Thomas’ Hospital and King's College London.

Satveer studied medicine at the University of Cambridge. She was awarded a NIHR Advanced Fellowship for her research into psoriasis.

Catherine Smith

Prof Catherine Smith

Professor of Dermatology and Therapeutics and Consultant Dermatologist at St John’s Institute of Dermatology, Guy’s & St Thomas’ Hospital and King's College London.

Catherine holds a NIHR Senior Investigator Award. She chaired the UK’s NICE guidelines on psoriasis and the British Association of Dermatologists guidelines on biologic therapy for psoriasis.

Jonathan Barker

Prof Jonathan Barker

Professor of Medical Dermatology and Consultant Dermatologist at St John’s Institute of Dermatology, Guy’s & St Thomas’ Hospital and King's College London.

Jonathan has published over 300 scientific papers and is editor of Rook’s Textbook of Dermatology. He is Past President of the International Psoriasis Council, European Society for Dermatological Research and European Dermatology Forum.

Helen McAteer

Helen McAteer

Chief Executive of the Psoriasis Association.

Helen frequently represents the patient experience of psoriasis at NICE and the Scottish Medicine Consortium, amongst other regulators and national bodies including NHS England.

Lucy Moorhead

Lucy Moorhead

Nurse Consultant at St John’s Institute of Dermatology, Guy’s & St Thomas’ Hospital.

Lucy is a trustee for the British Dermatological Nursing Group. She was awarded Psoriasis Nurse of the Year 2016, the Stone Achievement Award 2021 and the Guy's and St Thomas’ Patient’s Choice Award 2022.

Sam Norton

Sam Norton

Reader in Research Methods and Statistics, King’s College London.

Sam’s research explores the interconnection between physical and mental health. He leads the analysis of trials of in-person and digital interventions to help people with long-term conditions manage the impact on their lives.

Bola Coker

Bolaji Coker

Senior Data Manager and Statistician at Guy’s & St Thomas’ Hospital.

Bola leads the data management service. He has expertise in the development and maintenance of databases for medical research studies.

Sarah Chapman

Sarah Chapman

Psychologist and Senior Lecturer in Medicines Use, King’s College London.

Sarah’s research and teaching focuses on supporting patients who use medications for long-term conditions. She was awarded fellowships for her research at the University of Oxford and University College London.

Research Partners

We collaborate with patient and professional organisations and leading researchers globally, so that our research can rapidly advance scientific understanding and improve healthcare, for the benefit of people with psoriasis.

Podcasts Hear about the latest skin research, from the researchers and physicians at St John's Institute of Dermatology

Episode 1 Madeline

Episode 1: Welcome to mySkin

With your host Madeline Kroah-Hartman

In this episode, Madeline speaks with Professor Catherine Smith and Dr Satveer Mahil, chief investigators of the mySkin study. In the inaugural podcast, they discuss the creation of the mySkin study, and why is it of interest to the psoriasis community.

Listen on:  

December 19, 2023

Episode 2 Madeline

Episode 2: Artificial Intelligence in Skin Health

With your host Madeline Kroah-Hartman

In this episode, Madeline Kroah-Hartman speaks with Dr Alexandra Paolino and Dr Shern-Ping Choy about recent research on artificial intelligence in skin health.

Listen on:  

January 9, 2024

Episode 3 Madeline

Episode 3: Human Cell Atlas - Mapping skin health at the single-cell level

With your host Madeline Kroah-Hartman

In this episode, Madeline Kroah-Hartman speaks with Dr Magnus Lynch and Dr Clarisse Ganier about recent advances in understanding skin health at the single-cell level, including the work of the Human Cell Atlas.

Listen on:  

March 8, 2024

Disclaimer: The information in our podcast is based on the research and expert opinion at the time of recording.

Contact If you have any questions or comments on mySkin, our survey or research, we look forward to hearing from you.

mySkin
St John’s Institute of Dermatology
9th Floor, Tower Wing
Guy's Hospital
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London, United Kingdom