Take Part in Research

See below for opportunities to take part in psoriasis research, or to share your experiences. Please note that these projects are not run by the Psoriasis Association, but by external parties such as academic research departments.

If the opportunities below do not match the type of project you are looking to be involved in, you can also take a look at 'Be Part of Research', which is run by the National Institute for Health Research (NIHR) and will give you lots of information about taking part in clinical trials and allow you to search for a relevant trial in your area.

A short survey to help design a study on personalised ‘as required’ treatment for psoriasis

Personalised ‘as required’ treatment - a new concept for maintaining clear skin in psoriasis

At the moment, doctors recommend that people continue biologic treatment for their psoriasis, even when their skin is completely 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 their psoriasis begins to come back.

If people only take a drug when they need it, this could reduce risks and burden to patients and save the NHS money.

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

If you are currently receiving a biologic for your psoriasis, the researchers would like your help in designing this research to make sure they consider everything that is important to people with psoriasis. This survey will take around 5 minutes to complete.

Take the survey here

If you have any questions or would like more information, please contact the lead researcher, Dr Satveer Mahil, Consultant Dermatologist, at psoprotect@kcl.ac.uk.

Help shape a new project looking into inverse and flexural psoriasis

I am a Dermatology Registrar at the Norfolk and Norwich Hospital working with 3 other Dermatology Registrars/Clinical fellows across the country with the UK Direct Clinical Trials Network (DCTN). We are planning to create a new project relating to flexural or inverse psoriasis as we realise this is an important area for patients struggling with psoriasis and there is not much information available in the research literature. We would like to gather some patient opinions on what is important for you and what research questions you would want answered around flexural or inverse psoriasis. For example, we would be interested to hear your opinions on the following:

  • How do patients feel about applying a treatment? E.g.: how messy are they? Do you experience any side effects? Can you tolerate them? Do they work/help? Which is the best treatment?
  • What is the psychological impact and burden of flexural or inverse psoriasis?
  • Patient satisfaction with certain treatments
  • Are topicals or tablet therapies better for inverse or flexural psoriasis?
  • Any other issues you feel are important or not addressed with your flexural or inverse psoriasis

If you would be happy to discuss your opinions on these questions, or on any other aspects relating to flexural or inverse psoriasis, please get in contact with Dr Priya Patel at Priya.patel@nnuh.nhs.uk.

Testing a new questionnaire to measure how much a person’s psoriasis affects the quality of life of their partner and family members

Psoriasis can affect the lives of partners and family members, but this important impact is often ignored. Researchers at Cardiff University have created a simple questionnaire the 'Family Reported Outcome Measure' (FROM-16) to measure this impact. They need your help to test this questionnaire before it can be used routinely to better understand and care for the health and social needs of partners and families.

The researchers invite people with psoriasis and their partners or other family members (aged at least 18 years) to complete this 5-minute survey: https://cardiff.onlinesurveys.ac.uk/measuring-the-family-impact-of-disease-

The information from this research will allow us:

  • to let clinicians know what the different scores mean so that partners and family members can be given the right kind of support
  • to be able to use the questionnaire when finding out how well new treatments work
  • understand the wider impact of psoriasis
  • The study has Cardiff University ethical approval: SREC reference: 21/19.

    If you have any questions, please contact: Rubina Shah at ShahR45@cardiff.ac.uk

How can we best support people who are prescribed medication/s for psoriatic arthritis?

Individuals with psoriatic arthritis can be prescribed different medicines to help manage their condition. Research has shown that what we believe about our medication may affect us in many ways. We are looking to speak to adults who are prescribed medication for their psoriatic arthritis to learn what may or may not help with their beliefs about psoriatic arthritis medication/s.

You can read the full Participant Information sheet by following this link: https://bathpsychology.eu.qualtrics.com/jfe/form/SV_8DoFBQzSHCPkYHs

If you would like more information or have any questions please do not hesitate to contact the researcher, Liz Sheils via email: es279@bath.ac.uk. You can either email your questions or request a phone call to discuss the research further.

Thank you for taking the time to read this information!

Psoriatic arthritis Priority Setting Partnership (PSP) survey

The British Psoriatic Arthritis Consortium is working with the James Lind Alliance to run a Priority Setting Partnership (PSP) in order to create a national top 10 list of research priorities for psoriatic arthritis.

The PSP opened in June 2020 with an initial survey which asked “what do you think are the most important unanswered questions in psoriatic arthritis research?”. Researchers have since combined the responses of over 317 people into 46 summary questions, and are asking for your help to choose the top 10 unanswered questions you want psoriatic arthritis research to address.

This is a unique opportunity for you to have your say in psoriatic arthritis research! They want to hear from people with different experiences and backgrounds: those with psoriatic arthritis, their families, carers and clinicians. The survey results will be used to help prioritise funding for research in the future.

Take the survey now.

Volunteers needed for study that tests whether exercise helps psoriasis!

Investigating the therapeutic benefits of exercise in patients with psoriasis.

This study aims to find out if exercise can help psoriasis. To do this, researchers have created a 10-week group walking exercise programme. You only need comfortable trainers to take part.

The study involves:

  • Walking sessions led by a member of the research team
  • 3 appointments at the Dermatology Research Centre, Salford Royal NHS Foundation Trust (psoriasis assessment, heart health-check and blood sample)
  • Contact with the research group for up to 10 weeks after the exercise programme has finished.

They are looking for people who are/have:

  • aged between 18 and 60
  • psoriasis that started before the age of 40
  • some psoriasis on their skin
  • psoriatic arthritis (and those who do not have psoriatic arthritis).

This study is not suitable for people who are/have:

  • restricted mobility
  • pregnant or breastfeeding
  • participating in other exercise programmes
  • taking medicines which affect heart rate (eg beta-blockers).

Inconvenience/out-of-pocket expenses will be reimbursed.

The study has been given favourable ethical approval by the NHS research ethics committee. If you would like to volunteer please contact Mr Rory Sheppard by phone (07918 040402) or email (rory.sheppard@postgrad.manchester.ac.uk).

Network models of fatigue and pain in rheumatic and musculoskeletal diseases

A team from Ulster University are working in collaboration with colleagues across Europe to investigate which factors are associated with pain and fatigue as symptoms of rheumatic and musculoskeletal conditions. This research will involve a European wide survey questionnaire and is funded by the European League Against Rheumatism (EULAR).

You can take part in this study if you are 18 years of age or older and have a rheumatic or musculoskeletal disorder (i.e. Psoriatic arthritis, Fibromyalgia, Rheumatoid Arthritis, Osteoarthritis, Systemic Lupus Erythematosus, Spondyloarthritis/ Bechterew's disease, Sjögren's syndrome, Scleroderma/ Systemic sclerosis, or Mixed Connective Tissue Disease).

Participation in this study will take approximately 10 minutes (basic survey) or 20 minutes (full survey) depending on your preferences. Your data will be processed confidentially and your name will not be linked to the results. More information and access to the survey questionnaire can be obtained by clicking on the following link: https://encuestas.ugr.es/index.php/158482?lang=en

If you have questions, please get in contact with Professor Ciara M. Hughes (Ulster University), United Kingdom. Email address: cm.hughes@ulster.ac.uk

Online survey for PhD research project: Everyday experiences of living with a visible facial difference

This research aims to investigate the everyday experiences of those living with a temporary or permanent ‘visible facial difference’ (e.g. facial psoriasis, hair loss from eyebrows, facial burns, marks, or scars), with focus on the practices, services, or organisations that may provide treatment or support to those affected.

Who can take part?

Anyone:

  • Aged 18 or over
  • Who identifies as having a ‘visible facial difference’ (as defined above)

What will taking part in the research involve?

The research involves taking part in a short online survey. The survey contains a range of questions focusing largely on the following topics: personal history of facial appearance, everyday experiences of living with a visible difference, and experiences of seeking support/treatment. There is space at the end of the survey for you to leave your contact details to indicate if you wish to be involved in a follow-up chat/interview from the survey – whether you do this or not is completely up to you.

Please follow this link to find out more information about the project and take part in the survey: https://glasgow-research.onlinesurveys.ac.uk/online-survey-for-phd-research-project-exploring-everyday

If you have any questions, please contact Kerry Gillespie at: k.gillespie.1@research.gla.ac.uk

Be interviewed for a study looking into people’s experiences of Adalimumab biosimilars

Are you living with psoriasis? Have you been offered or are you using an Adalimumab biosimilar (e.g. Amgevita, Imraldi, Hyrimoz and Hulio)?

Researchers at Sheffield Hallam University are seeking people living with psoriasis to take part in an online interview to share their experiences of being offered an Adalimumab biosimilar. Findings could potentially lead to changes in how patients are offered biosimilar medications.

The researchers would like to speak to people who are using an Adalimumab biosimilar, as well as those who have declined it.

What will I be required to do?

During an audio recorded online interview using WebEx with a member of our research team you will be asked to informally discuss your views and opinions relating to your psoriasis treatment and your experiences of being offered an Adalimumab biosimilar. The interview will last between 45 – 60 minutes.

Take part if you:

✓ Are over 18 years of age
✓ Are living with psoriasis
✓ Have been offered an Adalimumab biosimilar

If you participate you will receive a £25 voucher as a thank you for participating.

If you are interested in taking part, or would like to know more, please contact Dr Holly Wilcockson at h.wilcockson@shu.ac.uk.

An attentional bias approach towards understanding and reducing the psychosocial burden of psoriasis

Attentional bias is a process whereby an individual excessively allocates their attention towards certain types of information more so than other types. For example, those with anxiety show a tendency to allocate their attention towards threatening information. There is a lot of research on anxiety and attentional bias, but very little on those with psoriasis. This research is important as psoriasis has been linked to higher levels of anxiety, stress and low mood, and if researchers are able to demonstrate attentional biases among those with psoriasis, this could enable new interventions to be developed that aim to reduce psoriasis symptoms.

Participants who take part in this research will be asked to complete questionnaires regarding their emotional well-being and self-evaluation of psoriasis, followed by a reaction time task.

How To Get Involved

Researchers are recruiting through a website called Prolific (https://www.prolific.co/), which is a research recruitment website that enables them to pay participants for their time. To take part in the research all you would need to do is register with Prolific (it’s free) and email your Prolific ID (this can be found in your account settings) to s.etty-2018@hull.ac.uk, so that you can be included on the list of participants. Please note this research task requires the use of a laptop/desktop computer.

Recruitment criteria:

  • Aged between 18 and 65 years old
  • Active psoriasis with visible lesions
  • No other skin conditions
  • Psoriasis to have larger self-perceived impact than any other existing health conditions
  • No major psychiatric disorders (e.g. bipolar disorder, schizophrenia, eating disorders etc.)
  • Access to a laptop
  • No vision problems that cannot be corrected by lenses/glasses.

If you have any questions or would like further information about this study, please contact Sarah Etty on s.etty-2018@hull.ac.uk.

Recruitment page: https://www.prolific.co/

Take an online survey to help us understand how the COVID-19 pandemic is affecting people with psoriasis

In the video below, psoriasis experts, Professor Catherine Smith and Dr Satveer Mahil of St John’s Institute of Dermatology in London introduce PsoProtectMe – a new survey to support vital research into COVID-19 and psoriasis.

Questions answered in this video include:

  1. What is PsoProtectMe, and why is it important? (0:20)
  2. Who should take part in PsoProtectMe? (1:25)
  3. How can people take part and what will they need to do? (2:17)
  4. Can patients revisit the survey if they catch COVID-19 after completing it initially? (4:12)
  5. How will participants’ data be stored and can they withdraw it if they change their mind at a later date? (5:02)

The Psoriasis Association is honoured to be collaborating once more with world leading experts on psoriasis at the St John’s Institute of Dermatology, Guy’s and St Thomas’ NHS Foundation Trust, London and the University of Manchester on a vital piece of research regarding psoriasis and COVID-19 (coronavirus).

PsoProtectMe (website news)PsoProtectMe is an online survey for people with psoriasis to complete, irrespective of whether you have symptoms of COVID-19 or not.

We are asking everyone with psoriasis to complete this important online survey, or to ask a friend or family member to complete it on your behalf. The online PsoProtectMe survey takes only 5-10 minutes to complete and asks about your symptoms, psoriasis treatments and any underlying health conditions you may have. If you have suffered from COVID-19, you will be asked how this has affected you and your psoriasis. If in the future you develop COVID-19 we would ask that you revisit the survey (you will be provided with a unique reference number at the end) and let us know of your experience.

Please do complete the survey irrespective of the type or severity of psoriasis you have, whether you are currently treating your psoriasis or not. We need all ages to complete the survey in order to build an accurate picture.

Your information will help us understand how the COVID-19 pandemic is affecting people with psoriasis, and whether the treatments used for psoriasis increase or decrease the risk of severe COVID-19 infection. This will help healthcare professionals make important decisions about the clinical care of people with psoriasis during the pandemic. Which is why, even if you are well and have not had any symptoms of COVID-19 we really need you to answer this survey call. It could be that your treatment is beneficial in helping protect people from COVID-19 or it could be that one type, or severity of psoriasis affects the body’s response to this virus.

Your contribution will benefit everyone – please help by completing the PsoProtectMe survey today.

Helen McAteer, Chief Executive of the Psoriasis Association commented, “Whilst the COVID-19 pandemic has been a worrying time for us all, it has again shown the strength of the psoriasis community that registries such as PsoProtect and now PsoProtectMe have been established so quickly to help further our understanding and treat people with psoriasis and COVID-19. The commitment of the teams at the St John’s Institute of Dermatology and the University of Manchester, with support from the Psoriasis Association is essential to the understanding not just of psoriasis, but all health events that may affect people living with the condition. Please do give 5-10 minutes to complete the survey – your information really is important.”

Be interviewed for a study looking into the weight management experiences of people with psoriasis

Are you living with psoriasis and above your desired weight? Researchers at King's College London are seeking men and women with medically diagnosed psoriasis and a Body Mass Index (BMI) of more than 25 to take part in a research study looking into their weight management experiences. In particular, researchers are looking to recruit people from a diverse range of ethnic backgrounds.

Why take part in the study?

This study is part of a bigger project which aims to develop a weight-loss intervention for people with psoriasis and an unhealthy body weight. By volunteering your time to the study, you will help the process of developing a tailored patient care intervention for weight management, designed for people with psoriasis who struggle to lose weight.

Take part if you:

  • Are over 18 years of age
  • Have a medical diagnosis of psoriasis
  • Have a body mass index (BMI) of 25 or over
  • Are able to speak and read English

What do I have to do if I volunteer my time to the study?

  1. You should sign a consent form, indicating your agreement to participate
  2. You should fill out a demographic questionnaire, asking for your age and gender
  3. You should be willing to answer several interview questions which will take approximately 45 minutes of your time.

Interviews will be conducted by phone or online via Microsoft Teams, and any personal information will be stored in an electronic form only.

In total, your participation will not take more than 1 hour and all of the information you share will be anonymised and remain confidential.

If you are interested in taking part, or would like to know more, please contact Neli Pavlova at neli.pavlova@kcl.ac.uk, or send a message on +447918242284.

PLUM - A research project looking at the causes of pustular psoriasis

The clinical research team under Professor Catherine Smith at St John’s Institute of Dermatology, Guy’s Hospital, London, in collaboration with Dr Francesca Capon’s group at King’s College London (Department of Medical and Molecular Genetics) are running a research project looking at the potential causes of pustular psoriasis.

Click to enlarge
The PLUM clinical research team

The observational research study is known as PLUM (Pustular psoriasis, elucidating underlying mechanisms) and is looking for patients with a diagnosis of pustular psoriasis to take part at centres around the country. More info can be found here.

The study involves collecting data and clinical samples from patients at one study visit, with the option for recall to a couple of additional visits for further samples within the following 1-2 years.

Dr Capon explains why they are conducting the study:

What is the objective of our research?
The main aim of our research is to identify genetic changes that lead to the onset of pustular psoriasis. We have already identified a small number of genes that are malfunctioning in pustular psoriasis patients and these discoveries have taught us a great deal about the causes of the disease. We therefore believe that identifying additional pustular psoriasis genes will shed further light on disease mechanisms and help the development of much needed treatments.

Why are we collecting blood samples?
Blood cells are a source of both DNA and RNA (a molecule that is similar to DNA, but is only produced from genes that are active at a given moment). Comparing the DNA of affected and unaffected individuals can help us uncover genetic differences that are associated with the disease. Likewise, comparing the RNAs of patients and controls can show us which genes are abnormally active in affected individuals.

Why are we collecting skin samples?
Pustular psoriasis mostly affects skin. This is therefore the tissue from which we can learn the most about disease mechanisms. For this reason, we are planning to compare blood samples with skin samples from affected individuals and healthy controls.

PLUM is open at a number of centres around the country. If you are interested in finding out more, please visit our webpage or contact us at dermatologytrials@gstt.nhs.ukb

We use cookies to help us provide you with a better service, but do not track anything that can be used to personally identify you. If you prefer us not to set these cookies, please visit our Cookie Settings page or continue browsing our site to accept them. Close