Click here for COVID-19 (coronavirus) advice for people living with psoriasis and psoriatic arthritis.
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 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?
- 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-everydayIf you have any questions, please contact Kerry Gillespie at: firstname.lastname@example.org
British Association of Dermatologists' 2021 patient survey
The British Association of Dermatologists have launched their 2021 Patient Survey, and they want to hear from you about your experiences of dermatology appointments throughout the COVID-19 pandemic.
The survey aims to uncover how you have personally coped with remote appointments, and whether you think the same level of care can be achieved without face-to-face consultations.
It also covers prescriptions and how dermatology issues affect our mental health. If you have had a dermatology appointment during the pandemic, or have a view on whether remote consultations should continue post-pandemic, please share your experiences.
Brit-PACT telemedicine survey for people with psoriatic arthritis
The British Psoriatic Arthritis ConsorTium (Brit-PACT) has created a survey in order to collect psoriatic arthritis patients’ experiences of ‘telemedicine’ (e.g. telephone and video appointments) for rheumatology-related appointments during 2020/21. Remote appointments were the main option for many people with psoriatic arthritis during this period.
The survey data will be used to summarise the experiences of people with psoriatic arthritis and trends of note at the virtual Brit-PACT meeting in March, and will hopefully be used by healthcare professionals going forward, revealing what works/doesn’t work from a patient perspective.
The survey should only take a few minutes to complete.
Effectiveness of COMPASS (new online therapy) on reducing anxiety and low-mood in long-term conditions during COVID-19: Randomised Controlled Trial
Compared to the UK population, people living with long-term conditions (LTCs) are two to three times more likely to experience depression and/or anxiety. This often has a significant impact on their health outcomes. COVID-19’s challenges have increased the number of people with LTCs who experience anxiety and/or depression.
We, researchers at the Health Psychology Section
at King’s College London, developed a digital cognitive-behavioural
therapy-based (CBT) treatment in collaboration with patients; COMPASS,
tailored to people living with LTCs. CBT explores thoughts, feelings and behaviours which may
make depression and/or anxiety worse. It uses this knowledge to develop
new personalised ways of managing depression and/or anxiety, as well as
focusing on aspects of managing a LTC, like taking medications.
Our aim is to recruit 200 people with different LTCs, from UK charities into a randomised-controlled trial. We are looking for adults with psoriasis who experience low mood and/or anxiety related to their long-term condition.
Participants will be randomly assigned to receive either COMPASS in addition to support from the UK charities or the charity support alone. This will allow us to evaluate how well COMPASS reduces depression and/or anxiety (clinical effectiveness) after 12 weeks.
To understand experiences in more depth, we will invite participants to take part in an interview before treatment and/or after 12 weeks.
The study is led by Professor Rona Moss-Morris and her team at King’s College London.
Take part in a short online survey looking at levels of distress and associated risk factors
Living with a skin condition, such as X-linked ichthyosis (XLI), ichthyosis vulgaris (IV) and psoriasis can be associated with experiencing distress. We are undertaking a study to better understand the frequency and severity of distress associated with these three conditions, and to try and understand what might contribute to this. Our findings might help inform future support offered to people living with these conditions.
If you have a diagnosis of psoriasis, and are over 18 years old, we would be extremely grateful if you could complete the following short (30-40 minute) survey:
Georgina Wren and Dr William Davies, Cardiff University
Help psychologists test a 1-week online writing intervention for adults living with chronic skin conditions
Does psoriasis affect how you feel about your body?
If so, please consider helping us test whether a one-week online writing intervention can improve body image in individuals living with a skin condition, and be in with a chance to win a £50 voucher.
Who can take part?
- Aged 18 or over.
- Living with a skin condition (e.g. psoriasis).
- Feels their skin condition negatively impacts their relationship with their body.
- Able to read and write in English.
What will it involve?
You will be asked to complete three 15-minute online writing tasks over the course of a week. You will also be asked to complete several questionnaires before the first writing task, after the final writing task and one month later. As this is a randomised controlled trial, you will be randomly assigned to either: (1) the writing intervention or (2) a control writing task. If you are allocated to the control tasks, you will have access to the intervention material at the end of the study.
Please follow this link to find out more and take part: https://sheffieldpsychology.eu.qualtrics.com/jfe/form/SV_5avZMk39cP4xCcd
Please contact Dr Kate Adkins (Trainee Clinical Psychologist, University of Sheffield) via email@example.com for further information.
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 firstname.lastname@example.org.
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 email@example.com, so that you can be included on the list of participants. Please note this research task requires the use of a laptop/desktop computer.
- 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 firstname.lastname@example.org.
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:
- What is PsoProtectMe, and why is it important? (0:20)
- Who should take part in PsoProtectMe? (1:25)
- How can people take part and what will they need to do? (2:17)
- Can patients revisit the survey if they catch COVID-19 after completing it initially? (4:12)
- How will participants’ data be stored and can they withdraw it if they change their mind at a later date? (5:02)
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).
is an online survey for people with psoriasis to complete,
irrespective of whether you have symptoms of COVID-19 or not.
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.
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
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.
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?
- You should sign a consent form, indicating your agreement to participate
- You should fill out a demographic questionnaire, asking for your age and gender
- 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 email@example.com, or send a message on +447918242284.
Help test an online support programme for people with conditions which affect their appearance
Researchers at the Centre for Appearance Research, based at the University of the West of England, are looking for volunteers to test a new online programme that helps people view themselves more positively.
The online programme is designed for adults with conditions that affect how they look, such as psoriasis, and encourages people to focus on what their bodies can do, rather than how they look. It involves completing three short writing tasks over 5 days.
As a thank you for taking part, participants will be entered into a £150 prize draw.
If you would like to take part, or want to find out more, please contact Ella Guest from the Centre for Appearance Research either by email at firstname.lastname@example.org or by phone on 0117 32 87045.
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.
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.