Your chance to be part of the solution...: Psoriatic arthritis treatments

Organisation or institution: University of Aberdeen

This is now closed

Main study contact: Claire Hunter

Public contact details: [email protected]

Description of activity: Some people with psoriatic arthritis have difficulty maintaining a healthy body weight, but we don’t know exactly why this is, or why this affects some people and not others.

We do know that there are lots of factors which can influence body weight and having a rheumatic disease can also affect these factors.

The aim of this study is to find out whether people with psoriatic arthritis who have excess body weight or low body weight have different lifestyle habits to those who have a heathy body weight.

We also aim to understand the impact of chronic pain, and reduced mobility and function on your lifestyle habits.

Whether you have lost or gained weight, or your weight hasn’t changed since your diagnosis, we are interested in hearing from you.

This will help us understand the factors that both help and hinder body weight maintenance. There are two phases of this study:

1) an anonymous online survey; and
2) an optional follow-up interview.

Recruit criteria: People living in the UK who have been diagnosed with psoriatic arthritis by a rheumatologist, are aged 18 and over, can speak English, and have never had an eating disorder (anorexia nervosa, bulimia nervosa, binge eating disorder, orthorexia, ARFID)

Where? Remote, online (survey) / video call (interview)

Time commitment: The online survey will take approximately ten minutes to complete, and the optional interview will last between 30 and 60 minutes.

Closing date: The survey closes on 8 August 2024. Interviews will take place during August and September 2024.

Other information: To learn more about this study, or take part, please read the participant information sheet: 

Funder/sponsor: University of Aberdeen

This is now closed

Organisation or institution: Atlas Primary/Virtue Research

Contact: [email protected]

Description of activity: PsA patient's can share their experience on their treatment journey, by participating in a 15 minute survey that would compensate with a $35 check when the study closes out.

To apply, if qualified complete the survey: https://app.virtueresearch.com/c/LIGRBPNC

Recruit criteria: Psoriatic arthritis patient's in the USA, >18 years of age, currently receiving treatment.

Where? USA

Time commitment: For the next 30 days

Closing date: 21 June 2024

Funder/sponsor: Atlas Primary

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

Organisation or institution: Amgen

Contact:  [email protected]

Description of activity: The study will aim to estimate the efficacy of apremilast compared with placebo in the treatment of juvenile psoriatic arthritis (JPsA) in pediatric participants 5 to less than 18 years of age.

Recruit criteria: Male or Female participants 5 to < 18 years of age at the time of randomization. Participant must have a confirmed diagnosis of juvenile psoriatic arthritis (JPsA).

Where? Birmingham, Nottingham

Time commitment: Start dates may differ between countries and research sites.

Closing date: November 2027

Other information:  Study is listed on https://bepartofresearch.nihr.ac.uk/

Funder/sponsor: Amgen

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This study is now closed

Activity title: 

Organisation or institution: Choice Health

Main study contact: Pauric Greenan

Public contact details: [email protected]

Description of activity: We work in clinical trials and research (specifically in the field of imaging) and we currently have a paediatric psoriatic arthritis study that requires a review of the language used in the Patient/Participant Information Sheet (Informed Consent Form). We would require 3 reviewers who generally will have experienced the condition previously (and/or a parent). We need comments on the docs shared with you and also to complete the review questionnaire attached.

Recruit criteria: 3 Past patients/parents of patients

Where? remote

Time commitment: 1-3 hrs each

Closing date 8^th January 2024

Other information: Any questions, please contact Pauric on email above or 07880006046

Funder/sponsor: Choice Health

This opportunity is now closed

Organisation or institution: University of Oxford.

Main study contact: Lija James

Public contact details

Email: [email protected]

or  through QR code registration

Description of activity: We are looking for people to join our patient partner group for the COLIPSO study. This study will investigate the extent of liver disease in psoriatic disease. Patients with psoriatic disease have a much higher risk of developing non-alcoholic liver disease. 

This causes significant impact on their life and is a difficult clinical problem as some therapies for psoriasis and arthritis may worsen the liver disease.  Previously the only tests available have been blood tests (which are often normal until the liver is quite damaged) or a liver biopsy (an invasive and risky procedure which only takes a very small sample of the liver).

Our colleagues have developed and tested a new type of MRI scan which can measure inflammation and scarring in the liver allowing us to study liver disease in detail.

We want to use this new technology to study the proportion of people with psoriasis who also have associated liver disease and measure how severe this is.  We will use blood and stool samples to study why and how the liver disease develops in many people with psoriatic disease. 

We will repeat the scans and research samples after 6 months on a new treatment to see how common psoriasis treatments affect both inflammation and scarring in liver disease.

Recruit criteria: Individuals with a diagnosis of psoriatic arthritis.

Where? Remote session on Zoom

Time commitment: 1 hour online session

Closing date: 19/12/2023

Funder/sponsor: National Psoriasis Foundation. Perspectum. UCB Biopharma SRL.

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This opportunity is now closed

Activity title

PREDICT - Psoriatic Arthritis Recognising Early Disease Indicators Conferring Treatment response

Organisation or institution

University of Oxford

Main study contact

Dylan McGagh

Public contact details

Email: [email protected] or through QR code registration

Description of activity

We are looking for people to join our patient partner group for the PREDICT study. This study will investigate whether blood tests can predict which patients will respond to different treatments. This study will also test the use of digital tools such as smartwatches and apps to capture more about how patients with psoriatic arthritis feel and function in response to different treatments. We want to gather the perspectives of individuals with psoriatic arthritis on our overall study aims, gain some feedback on our study specific app and more broadly ask on perspectives of using digital measures to capture information on symptoms and mobility.

Recruit criteria

Individuals with a diagnosis of psoriatic arthritis

Where?

Remote session on Teams / Zoom

Time commitment

1.5 hour online session

Closing date

10/12/2023

Funder/sponsor

British Psoriatic Arthritis Consortium (Brit-PACT)

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This opportunity is now closed

Organisation or institution: iPROLEPSIS https://www.iprolepsis.eu

Main study contact: Laura Coates

Public contact details: https://www.iprolepsis.eu/contacts

Description of activity: We are looking for people with psoriatic arthritis to help with a survey. This survey is part of the iPROLEPSIS project, funded by the European Union. With a duration of 4 years this project aims to develop a digital health system for the care of psoriatic arthritis patients.

Within iPROLEPSIS we want to apply technology, such as smartphones and smartwatches to help you monitor your disease and help you find the coping mechanisms that suit you.

We are at the beginning of the development process and would love your input on various ideas. Your input will be used to create user requirements for the developed services. So your opinion counts!

All data is confidential and completely anonymous. It will take about 20-30 minutes to fill out this questionnaire. Your efforts will be well appreciated.

Recruit criteria: People diagnosed with psoriatic arthritis

Where? Online survey

Time commitment: 20 - 30 minutes

Closing date: 31 July 2023

Funder: European Union

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This opportunity is now closed

Organisation or institution: University of Oxford.

Main study contact: Caroline Struthers.

Public contact details: Link to form

Description of activity: We are looking for people to help with a new project called Trialblazers. We are aiming to improve the way trials are designed and carried out by involving you from the very beginning.

We are holding an in person "Build-a-Trial" workshop for people with mild or suspected psoriatic arthritis in Oxford on: 18 July from 10.30-2.30pm.

We will also be holding two two-hour online Zoom workshops on 27 July.

During the workshops, we will ask for your input into key decisions about a new trial testing the best ways to treat mild psoriatic arthritis.

These decisions could include how to recruit participants, acceptability of treatment alternatives, which symptoms are most important to treat, and how to measure the treatment effects in the best way.

Recruit criteria: You will have mild (or suspected) psoriatic arthritis, or be a friend or family member; over 18.

Where? In-person workshop, Exeter Hall, Oxford; Online workshops will be on Zoom.

Time commitment: In-person workshop will be from 10.30am-2.30pm. No preparation needed. Online workshop will be from 2-4pm and 5-7pm.

Closing date: 23 July 2023.

Other information: Workshop participants will be paid £100 plus reasonable expenses (travel, childcare etc.).

Online participants will be paid £60 per workshop plus appropriate refreshments supplied by post!

Funder/sponsor: University of Oxford, Participatory Research Fund.

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This opportunity is now closed

Organisation or institution: Exafield UK

Main study contact: Laura Girvan

Public contact details: [email protected]

Description of activity: My name is Laura and I work for Exafield. We are conducting a study that involves patients with Psoriasis and/or psoriatic arthritis.

We want to contact patients suffering from psoriasis and/or psoriatic arthritis that would like to join us for a 60 minute online interview about their perspective on these conditions.

The project consists of a 60-minute online (web-assisted telephone interview) and should they decide to join us they will receive £60 reimbursement for their participation, which is payable via cheque or BACs.

We have a screening form we would like to direct any participants to, it can be found here 

Recruit criteria: patients with psoriasis and/or psoriatic arthritis

Where? Remote, online interviews

Time commitment: 60 minutes

Closing date: End of June 2023

Funder/sponsor: Exafield UK

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This opportunity is now closed

Organisation or institution: A student from Walden University PhD program.

Main study contact: Katie McCann

Public contact details:  [email protected]

Description of activity: The participant will be interviewed with about 13 questions on their experiences living with psoriatic arthritis and their quality of life.

Recruit criteria: men and women between the ages of 18-25. Primary diagnosis of PsA. Living in the United States.

Where? Remote, in-person (Nashua, NH), phone call, or Survey Monkey.

Time commitment: 60-90 minutes.

Closing date: 31 August 2023

Funder/sponsor: Katie McCann

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This study is now closed

Organisation or institution

Department of Rheumatology and Clinical Immunology at the Amsterdam UMC, location AMC

Main study contact: Dr. Marleen van de Sande

Public contact details: [email protected]

Description of activity: Up to 1 in 3 people who have psoriasis can go on to develop a related arthritis causing joint pain and disability.

Researchers are exploring whether it might be possible to treat people who have psoriasis to reduce their risk of developing psoriatic arthritis.

This survey aims to understand what medications or lifestyle changes would be acceptable to people with psoriasis to reduce their chances of developing psoriatic arthritis in the future.

Understanding patients’ preferences is important to ensure future treatments of this kind are efficient and acceptable to patients. This survey is a one-time questionnaire that should not take longer than 20 minutes to complete. Participation is voluntary, and all responses to the survey will remain confidential and anonymous.

This study is in collaboration with Dr. Laura Coates (Principal investigator, Associate Professor, rheumatologist Oxford), Dr. Marie Falahee (Lecturer in Behavioral Rheumatology, University of Birmingham), Dr. Jorien Veldwijk (Assistant-professor, Erasmus School of Health Policy & Management), Prof. Stephen Pennington (Professor Of Proteomics, University College Dublin) and Prof. Oliver FitzGerald (Newman Clinical Research Professor, University College Dublin).

Recruit criteria: You can take part in this survey if you:

• Are aged 18 years or older
• Have been diagnosed by a doctor as having psoriasis
• Currently living in the United Kingdom
• Are able to read and complete a survey that is in English
• Have not been diagnosed by a doctor as having psoriatic arthritis

Where? Remote, it's an online survey

Time commitment: 20 minutes

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This study is now closed

Can you help a team of researchers?

A group of rheumatologists, dermatologists and people with joint disease and other medical professionals are working together to improve care for people with psoriatic arthritis, through the British Psoriatic Arthritis Consortium (BritPACT).

There are many highly effective medications (biologics) available in the UK to treat psoriatic arthritis but access to them can vary around the country.

The team are seeking to understand people’s experience of accessing biologic medicines (good or bad) and how effective they have found them.

Your input will help the development of future research projects and understand questions that are important from the perspective of people living with psoriatic arthritis.

Your input and time taken to complete this survey is valued highly. Your responses will all be anonymous.