Take Part in Research

Participants are needed for a study looking into the views of people with psoriasis. We are planning on running a future study to look at the benefits of a social group intervention for people with psoriasis, provided we receive funding. We are interested in whether this intervention improves people’s quality of life and mental wellbeing. We are running the current survey to see how people with psoriasis think this future research should be run. The study should take between 5-10 minutes.

To take part you must:

•          Be 18 years or older

•          Be diagnosed with psoriasis

If you would like more information, or would like to take part, please click on the link below.

https://nupsych.qualtrics.com/jfe/form/SV_6uqFTg8cDGA9lUa

   Please feel free to share the recruitment advert with others who may be interested in taking part in this 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.

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

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.

The session will last a maximum of 60 minutes.

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.

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.

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.

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

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.

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

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

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

***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