Take Part in Research

RESEARCH AIMS:

I’d like to talk to you to understand your journey. My aim is to gain insight into your experience,

from the time of your initial diagnosis to your current situation, and to learn how better support

could be provided in the future of chronic care. We're interested in hearing about your thoughts

and feelings throughout your journey with chronic illness. There are no right or wrong answers.

We believe this understanding can help us in assisting to develop support products/services for

people with chronic conditions.

WHO IS THE RESEARCH TEAM?

This study is for a PhD being undertaken at Politecnico di Milano (Polimi) by Sultan Serpil

Erdonmez. This stage of the research is being supported by PDR researchers, Prof. Andy

Walters, Prof. Dominic Eggbeer and Dr Katie Beverley. PDR are a design and innovation

consultancy and research centre, working with both commercial and academic aims. We work

alongside Cardiff Metropolitan University and all studies are approved by their ethics boards. If

you would like to find out more about PDR, please visit our website: www.pdr-design.com

WHAT WOULD BE ASKED OF ME?

We will talk about your experiences of leaving with a chronic illness from the time of your initial

diagnosis to your current situation. I would like to know which difficulties you have faced, what

kind of help you have received from formal services or informal care, which resources you have

found useful, what did you learn along the way on how to live well with your condition, and any

ideas you might have for making care and support better. We're interested in hearing about

your thoughts and feelings throughout your journey with chronic illness. We can talk in person

at the PDR Research Centre or at a suitable alternative location if you require. The conversation

will be captured through audio and video recordings and notes.

HOW LONG WILL IT BE?

The session will last a maximum of 60 minutes.

WHERE WILL IT BE?

In person or through a video call. If it is conducted in person, we will agree a suitable location

with you. If it is conducted through video or phone call, I will send you a secure link.

ARE THERE ANY RISKS?

There are very limited identified risks associated with this study. We will be asking about your

healthcare journey, and therefore it is possible that we will cover topics that you find distressing.

If at any point, for any reason, you wish to skip a question, please inform the facilitator who will

move on from the question. Also, you can withdraw from the study at any time, and we will

provide support service information.

ARE THERE ANY BENEFITS TO TAKING PART?

The knowledge gained from this study will help us to better understand the experience of chronic

care journey. In the long term, we hope this study will help us in developing products/services

that support and improve the experience of people with chronic conditions.

HOW DO WE PROTECT YOUR PRIVACY?

Your name and contact details will not be shared with anyone outside of the project team and

will not be used for any purposes other than this specific research study. Your details will be

deleted once they are no longer required. Your name and consent forms will be retained for ten

years, as required by the University.

The session will be audio recorded, and notes will be taken during our conversations. All

information about you will be stored separately from your name and consent form, ensuring that

you are not identifiable through your responses. Your answers to the questions will be used

solely for the purpose of this project and may be included as anonymised quotes in research

publications

WHAT HAPPENS NEXT?

You will find the “Consent Form” at the end. If you decide to participate, we kindly ask you to

sign the consent form. If you have any doubt, during the study day, researcher (Sultan Serpil

Erdonmez) will go through the information sheet with you and address any queries you may

have. You are free to withdraw at any time, without giving a reason.

If you agree to participate in this study, the collaboration required of you consists of providing

your authorisation for the collection of information.

FURTHER INFORMATION

If you have any questions about the research or how we intend to conduct the sessions, or to

sign up please contact the project lead:

Sultan Serpil Erdonmez

PhD Student in Design

Design Department, Politecnico di Milano

Email. sultanserpil.erdonmez@polimi.it

Daniela Sangiorgi (supervisor)

PhD, Associate Professor

Head of PSSD Master Program

Design Department, Politecnico di Milano

Email. daniela.sangiorgi@polimi.it

Andrew Walters (collaborator)

PhD, Director of Research, PDR

Cardiff Metropolitan University

Email. atwalters@pdr-design.com

We are looking to use real life images for a research study looking into how people with psoriasis are perceived by the general public.

If you have any images or would like some more information, please email Emmanuel at Emmanuel.toni@uwe.ac.uk

Help us create a user-friendly guide for navigating information on nutrition and psoriasis.

We are looking for people living with psoriasis to use the first draft and give feedback.

This will involve a 1-hour online video call with the lead researcher. During which you will be asked to use the guide and “think-aloud”. This involves speaking your thoughts out loud. We will also ask you a few questions about what you think of the guide.

Your input will help us to understand how people interpret the guide and find ways to make it clearer and more effective.

To take part you must:

• Have been diagnosed with psoriasis

  • Be aged 18 years old or over

  • Be able to read, write, and speak English fluently

  • Live at a UK address

  • Have access to the internet and a device (e.g., a tablet or laptop) to take part in a video call.

  Organisation: School of Life and Medical Sciences, University of Hertfordshire.

  This study has been approved by Health, Science, Engineering and Technology Ethics Committee with Delegated Authority, reference: LMS/PGR/UH/05501

  If you have any questions or are interested in taking part please contact lead researcher, Poppy Hawkins: p.hawkins@herts.ac.uk

Researchers are currently organising focus groups to explore the experiences of patients with anogenital psoriasis.

Anogenital psoriasis (in comparison to other types of psoriasis which may be more visible) is not often talked about by patients and doctors, and we have less information and evidence on for example on the best treatments for this condition. We would like to gain insight from patients living with the condition via focus groups to help inform a future clinical trial looking at the best treatment options.

Recruitment criteria

• Aged 18 or over
• A diagnosis of anogenital psoriasis by a dermatology specialst
• Willing to discuss your experiences via a small online focus group (3-5 people) lasting 1- 2 hours, held on Microsoft Teams (can be anonymous if preferable)

Research team contact email: psoar@nottingham.ac.uk

Are you living with psoriasis?

Would you be interested in helping us to develop a research project at Oxford University?

We will talk to people online and will reimburse:

· £30 for 60 minutes of your time

· Childcare costs

· Carer time

You can choose if you would prefer to join a small group conversation or talk to us 1:1.

We know that people are more likely to develop psoriasis, or for existing psoriasis to worsen, if they are also living with overweight or obesity. Research shows that a small amount of weight loss may improve psoriasis and is also likely to reduce the risk of related conditions, like type 2 diabetes, cardiovascular disease and metabolic syndrome. Doctors are encouraged to advise people with psoriasis and obesity to lose weight, but this does not happen regularly and is usually not very effective. We currently do not know the best way to support people living with psoriasis with weight management.

Our Oxford University research group is collaborating with King’s College London for this project. We want to work with people who are living with psoriasis to shape our research, learning about what matters most to you. We hope to chat about your experiences and opinions of weight change, diet and your skin. We will use these

conversations to inform new dietary and lifestyle treatments for psoriasis, and to work out how best to test them in our research studies.

Please contact Dr. Sarah Morrow (Oxford University), sarah.morrow@phc.ox.ac.uk for more information regarding this project. We would be so glad to hear from you.

Called the HIPPOCRATES Prospective Observational Study (HPOS), the online study will monitor people with psoriasis over a three-year period to see who develops PsA. It will be completely remote with participants filling in questionnaires online and sending small fingerprick blood samples by prepaid post. Initially looking to recruit the volunteers from the UK, the ultimate goal is to recruit 25,000 people with psoriasis across 12 countries.

The study is part of wider research called The HIPPOCRATES project investigating psoriatic arthritis across Europe. It is a large consortium of over 25 research groups across Europe, led by Professor Oliver FitzGerald in Dublin which aims to answer 4 key research questions around psoriasis diagnosis, prediction, response to therapies, and prognosis on who will get joint damage.

If you would like to find out more about the project, or take part, you can find out more at the HPOS study website

At the moment, doctors recommend that people continue regular biologic treatment for their psoriasis, even when their skin is well controlled (clear or nearly clear).

We know from clinical trials that some of these individuals may be able to stop treatment for a while, and then restart if / when the psoriasis begins to come back.

If people only take a drug when they need it this could reduce risks and burden to patients and give them more control, whilst also saving the NHS money.

Our research therefore aims to find out whether biologic treatments can be taken ‘as needed’ in routine care whilst still maintaining control of psoriasis.

Please help by filling out this survey:

https://forms.office.com/Pages/ResponsePage.aspx?id=FM9wg_MWFky4PHJAcWVDVldkFS5Tt5tDt6lgNXisraZUMFdGV1ZHUFpRSVhTNkdHSExaQ0I2SEdFVi4u

The METRED-P study is a clinical trial evaluating the effects of different dietary patterns in individuals with psoriasis. This dietary intervention study will be the first to assess the effectiveness of these dietary patterns at modulating psoriasis severity.

The study consists of 3 clinic visits at the Metabolic Research Unit, Corridor A (4th Floor) in the Franklin−Wilkins Building, King’s College London, 150 Stamford Street, London, SE1 9NH. Virtual diet consultation sessions will be hosted by a Registered Associate Nutritionist who will consult participants to follow a Mediterranean style and/or time-restricted eating diet for 12 weeks.

Participants will record food and drink intakes in handwritten diet diaries, and complete confidential multiple-choice questionnaires about psoriasis. At the clinic visits, a Consultant Dermatologist will conduct a psoriasis examination and the Nutritionist will take body composition and clinic blood pressure measurements. A phlebotomist will collect a fasting blood sample (approximately 4.5 teaspoons). ​

To participate in the study, volunteers should be adults (18 years of age or older), have a diagnosis of plaque psoriasis​, have a body mass index between 20-40​ and should NOT be receiving phototherapy treatment for psoriasis​ currently or in the three months prior to participating in the study.

More information: https://www.dietandpsoriasisproject-apple.com/

Contact information: Sylvia Zanesco (Nutritionist): dietandpsoriasisproject@kcl.ac.uk

***UPDATE - Please note that Parts 1, 2 and 3 of this study are now closed to recruitment. Recruitment for Part 4 of the study has not yet commenced – details will be announced in due course.***

This is an opportunity for 12-17 year old patients with moderate to severe plaque psoriasis. The trial, sponsored by the pharmaceutical company, AbbVie, compares the treatment efficacy and safety of Risankizumab (Skyrizi) vs Ustekinumab (Stelara), two biologic therapies. All participants are guaranteed active treatment, regardless of whether they have had systemic therapy before.

Recruitment criteria (list not exclusive):

• Aged between 12 to < 18 years at the time of enrolment
• Have had a diagnosis of chronic plaque psoriasis for at least 6 months
• Have moderate to severe psoriasis, defined as ≥ 10% Body Surface Area (BSA) psoriasis involvement with a static Physician’s Global Assessment (sPGA) score of ≥ 3, or Psoriasis Area and Severity Index (PASI) ≥ 12


No history of:

• Erythrodermic psoriasis, generalised or localised pustular psoriasis, medication-induced or medication exacerbated psoriasis, or new onset guttate psoriasis;
• Active skin disease other than psoriasis that could interfere with the assessment of psoriasis;
• Clinically significant drug or alcohol abuse within the last 6 months;
• An allergic reaction or hypersensitivity to a biologic agent or its excipients;
• A latex allergy;
• An organ transplant that requires continued immunosuppression;
• Any malignancy except for successfully treated non-melanoma skin cancer or localised carcinoma in situ of the cervix.


No evidence of:

• Hepatitis B (HB) (hepatitis B virus [HBV]) or hepatitis C (hepatitis C virus [HCV]) infection;
• Human immunodeficiency virus (HIV), defined as confirmed positive anti-HIV antibody (HIV Ab) test;
• Genetic deficiency in IL-12/IL-23;


The following centres are open for recruitment into the study (please email the investigators directly):

• West Ambulatory Care Hospital, Glasgow: Areti.Makrygeorgou@ggc.scot.nhs.uk
• Frimley Park Hospital, Surrey: sara.sherif@nhs.net
• Royal Devon and Exeter Hospital, Devon: naomi.goldstraw@nhs.net
• Derriford Hospital, Plymouth: thurein.newin@nhs.net
• Guy’s and St Thomas’ NHS Foundation Trust, London: please email Eva.Hilger@gstt.nhs.uk or call 07917217601


Dr Wedad Abdelrahman, Chief Investigator (wedad.abdelrahman@gstt.nhs.uk)
Prof Carsten Flohr, Study Investigator (carsten.flohr@kcl.ac.uk)
Consultant Paediatric Dermatologists

St John’s Institute of Dermatology,
Guy’s & St Thomas’ NHS Foundation Trust