Taking 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 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.

Give feedback on a research grant proposal -

LifEstyle fActors and Psoriasis management (LEAP): Investigating the role of lifestyle factors in psoriasis self-care.

We are preparing a grant application for a student to complete a PhD around the topic of psoriasis and how lifestyle factors such as alcohol, smoking, weight, diet and physical activity impact the symptoms of psoriasis. The deadline to submit is in December 2020.

To check our research idea is worthwhile and our research plan is appropriate, we are looking to involve people with psoriasis in this planning phase to get thoughts on:

- Whether our research proposal aligns with interests of people with psoriasis
- Whether our written description is clear, understandable and acceptable to people with psoriasis
- Whether there are any potential (unintended) barriers to people with psoriasis taking part

We are looking for individuals who would be happy to confidentially review our grant application and provide feedback on the above topics via a telephone or email conversation.

If you are interested in contributing or may have a question before deciding, please don’t hesitate to contact me.

Name: Dr Maxine Whelan
Institution: Centre for Intelligent Healthcare, Coventry University
Email: ad5094@coventry.ac.uk
Phone: 07435330992 (if you decide to call please leave a voicemail with your name and phone number and I will phone you back)

ACT It Out: Piloting a prototype mobile app intervention for adults with visible differences

Researchers from the Centre for Appearance Research at UWE Bristol are looking for people based in the UK with psoriasis who are experiencing psychological / social difficulties related to looking different, to test ACT It Out, a prototype mobile app.

ACT It Out is designed to help adults (18+) who have any different or unusual appearance live a fulfilling life by doing more of what matters to you and reducing the impact of appearance concerns. The app is based on an evidence-based approach called Acceptance and Commitment Therapy, or ACT. ACT It Out was developed by a collaboration of UWE researchers, specialist psychologists and a group of people who have a different appearance. It is self-guided, meaning it does not involve real-time support from health professionals.

Taking part will involve using ACT It Out over roughly six weeks. ACT It Out is made up of 6 training sessions, which can each be done in one go or in chunks. There are also between-session activities that help build the skills taught in ACT It Out. Participants will also take an online survey made up of standardised questionnaires to do with your wellbeing at 3 stages: Before starting, after 8 weeks and 12 weeks. Some participants will also be invited for a telephone interview to talk through your experiences of using ACT It Out.

For more information and the chance to register your interest, click here.

Online focus group - Using machine learning to personalise biologic therapy for psoriasis

Researchers at the University of Manchester are seeking people with psoriasis to take part in an online focus group discussion.  

Take part if you:

✓ Are over 18 years of age

✓ Are living with psoriasis and on a biologic therapy  

✓ Would be happy to provide your thoughts and opinions on health data sharing and usage

The study aims to use large scale psoriasis data generated from registry and clinical trials to develop computational models (algorithms) to identify factors which would help predict patients for whom treatment with biologics will be most beneficial.

The purpose of the focus group is to obtain feedback, opinions and ideas through a conversation about your experience when choosing, or switching between, different biologic therapies, and the use of your health data.

The more informed people feel, the more likely they are to support the use of data sharing. So, it is of utmost importance to the researchers' initiative to keep people’s health data safe and secure and communicate how they do this to the public.

The results of the discussion will be used to help design their study and prioritise funding for research in the future. This is your chance to make sure the research addresses questions about psoriasis that are important to you and others, and is making the best use out of your health data!

If you are interested in taking part, or would like to know more, please contact Dr Haw at w.haw@manchester.ac.uk.

Exploring the experiences of parents and carers of children and young people with an appearance affecting condition

Researchers from the Centre for Appearance Research at the University of the West of England are looking for parents and carers of children and young people with psoriasis to take part in an online survey. The survey will ask you questions about your experiences of caring for a child with psoriasis and should take around 30 minutes to complete.

Any parent or carer (adult with caring/guardianship responsibilities) of a child or young person (0-18 years) with psoriasis can take part.

By sharing your experiences, you will be contributing to the knowledge and understanding of the experiences of parents and carers of children with an appearance affecting condition or injury. Using the data from this study, researchers plan to further develop support for parents and families. Your responses will help them to do this.

Anyone who completes the survey will be given a chance to enter into a raffle to win a £50 Amazon voucher, as a thank you for taking part.

If you are interested and would like to take part please click here.

Alternatively, you can email Maia Thornton at Maia.thornton@uwe.ac.uk to find out more.

The role of attributions, shame, and self-compassion on the mental health of individuals with facial differences

This study investigates whether the mental health of those with facial differences is affected by the way they interpret the negative reactions of others. This study will also investigate whether shame and self-compassion plays a role in this interaction.

You will be invited to complete a questionnaire with some demographic and appearance questions. This will be followed by questions about self-compassion, mental health, and shame. This study is completed online at a time and place of your convenience.

Eligibility: To take part you need to be aged 18 or over and have any form of facial difference (for example; facial palsies, cleft lip and palate, skin conditions that affect the face, birthmarks, burns, acquired disfigurement, scarring from accidents, craniofacial disorders, disfigurement from head and neck cancer).

Duration: 15 minutes in duration.

Researchers: Joel Moxey, joel.moxey@student.anglia.ac.uk, Dr Debora Vasconcelos e Sa, debora.sa@anglia.ac.uk.

Please click here to start the questionnaire

The study has received ethics approval by the School Research Ethics Panel (SREP) and ratified by the Faculty Research Ethics Panel under the terms of Anglia Ruskin University’s Policy and Code of Practice for the Conduct of Research with Human Participants.

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.

The Psoriatic Arthritis Priority Setting Partnership - A survey to have your say on the questions you would most like to see answered by psoriatic arthritis research

The British Psoriatic Arthritis Consortium (Brit-PACT) 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.

Brit-PACT logo (website news) largerThey want ideas and thoughts from people with different experiences and backgrounds: people who are living with psoriatic arthritis or psoriasis themselves, their families, carers and clinicians. This is your chance to make sure research addresses questions about psoriatic arthritis that are important to you and others! The survey results will be used to help prioritise funding for research in the future.

Please click here to start the survey now

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.

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 ella.guest@uwe.ac.uk or by phone on 0117 32 87045.

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.

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

The Psoriasis Association is the UK's leading national charity and membership organisation for people affected by psoriasis – patients, families, carers and health professionals Read More >

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Email: mail@psoriasis-association.org.uk

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