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.

Online focus group - Core Outcome Set for studies of multiple health conditions in pregnancy

Researchers from the MuM-PreDiCT research group (8 universities, funded by the Medical Research Council (MRC) and National Institute for Health Research (NIHR)) are aiming to improve care for pregnant women and birthing people with multiple long-term health conditions through research.

They are inviting women and birthing people to participate in an online focus group in order to share their views on what researchers should measure in all studies for pregnant women and birthing people with multiple health conditions. This is in order to create a Core Outcome Set, which will help shape the design of future research studies.

You are invited to take part in the online focus group if:

  • You are planning a pregnancy, or you have been pregnant in the last 5 years, AND;
  • You have 2 or more long-term physical (e.g. psoriasis, psoriatic arthritis, diabetes, asthma etc.) or mental health conditions (e.g. depression or anxiety).

  • The focus group will be conducted online via Zoom and will last 1.5 to 2 hours. If you have never used Zoom before, the researchers can arrange separate sessions to talk you through how to use the platform.

    You can bring along your partner/a family member/carer so they can also join the discussion.

    All participants' will be reimbursed with a £25 voucher for their time.

    There are two dates for the Focus Group:

  • Thursday 10th February 2022 (8pm - 10pm) - For women or birthing people with multiple long-term conditions only.
  • Tuesday 8th March 2022 (8pm - 10pm) - For women or birthing people with multiple long-term conditions, with their partner/a family member/carer.

  • If you would like to take part, or find out more, please contact Dr Siang Ing Lee by email at s.i.lee@bham.ac.uk.

    More information about this focus group and study can be found here.

Survey to understand feelings, emotions and behaviours in weight and psoriasis

People living with psoriasis often describe weight management as a challenge. Several factors are likely to explain why managing weight alongside psoriasis can be difficult. The present study aims to find out what factors such as feeling, and emotions can present as a challenge when people with psoriasis want to lose weight, beyond diet and physical activity. This can support the design of a more tailored weight loss approach which ultimately can lead to improved patient outcomes.

To take part, there are criteria you must fit to take part in this study, as follows:

You should be 18 years or older, with a medically diagnosed psoriasis and a body mass index (BMI) of ≥ 25 kg/m². You should hold a UK residence and have a sufficient command of the English language that will allow you to read and understand this information sheet and any study-related questionnaires. Due to the sensitive nature of the study, we are not able to accommodate participants with significant learning disabilities, reduced cognitive capacity, or any severe mental health issues such as schizophrenia, bipolar disorder, or severe depression.

Building a holistic understanding of weight management in psoriasis is a priority to ensure patients’ needs are addressed sufficiently and adequately.

To learn more about the study and take part in it please follow the link: https://tinyurl.com/yckmezjr

For more information, please contact Neli at neli.pavlova@kcl.ac.uk.

We are very much looking forward to hearing from you!

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.

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

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.”

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.uk.

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