Take part in research

This page details all of the current research studies looking for participants. Studies relate to axial SpA (AS), arthritis, rheumatology and musculoskeletal conditions, as well as research relating to long term conditions, pain and well-being.

Are you a researcher? Visit our information for researchers page to find out how to get your study advertised across our channels.

PAIN PATH Study

NASS are working with researchers at Keele University and the Midlands Partnership University NHS Foundation Trust, to undertake two new studies to improve how pain is treated in people with inflammatory arthritis.

What is involved?

The PAIN PATH studies are two separate but related studies. You can take part in one study (study 1), or both.

Study 1 – PAIN PATH Survey

This involves people with inflammatory arthritis completing a short online questionnaire about their pain and the pain care they have received for their arthritis. It takes around 20 minutes to complete.

Study 2 – PAIN PATH Longitudinal Study

This involves people with inflammatory arthritis answering questions using an online Patient Portal (called the “PAIN PATH Portal”) every week for 3 months to understand how often and why they take pain medicines.

The Portal is a secure online NHS system. It has been developed by the study team and NHS staff to collect information for this study. Any information entered in the Portal is stored on a secure NHS server. Every week people are asked to answer questions about how bad their pain has been, which pain medicines they have used, and why they have used them. These take around 5 minutes to answer. Every two weeks people are also asked to answer questions about how active their arthritis has been, how they are functioning, how they are sleeping, and how they are feeling. These take around 10 to 15 minutes to answer.

People can also use the Portal to enter information more often if they would find it helpful (for example, to keep track of their pain over time). They can download an anonymised copy of their question answers and share them with their doctors and nurses.

After 3 months, people can continue to use the Portal until the study ends (expected to be in December 2024).

Who can take part?

You can take part in the Survey (study 1) if you:

• have been diagnosed with axial spondyloarthritis, psoriatic arthritis, or rheumatoid arthritis.
• are at least 18 years old.
• receive care in one of the UK National Health Services.
• can complete an online questionnaire.

You can also take part in the Longitudinal Study (study 2) if you have:

• completed the Survey and answer that you have used pain medicines in the last month.
• have an email address (this is needed to register with the Portal).
• can read and answer questions written in English (or have help from someone else to do this).

We are also asking people with inflammatory arthritis that are attending rheumatology clinics across the Midlands to take part in these studies. They are being told about these studies at their clinic appointments. If you are one of these people and have already taken part in the studies, please do not take part again. People can only take part in the PAIN PATH studies once.

How Can I Learn More?

To learn more about the PAIN PATH studies, you can read the Participant Information Sheet, which can be accessed by clicking here.

To take part in the PAIN PATH studies, please click here (or you can follow the link in the Participant Information Sheet).

When Can I Take Part?

The PAIN PATH studies are now open to recruitment until the start of September 2024. You can consent to take part any time until then.

Why are the PAIN PATH studies needed?

Inflammatory arthritis, which affects over 1% of adults in England, refers to conditions causing joint inflammation. The most common types are rheumatoid arthritis, psoriatic arthritis, and axial spondyloarthritis.

Many people with inflammatory arthritis suffer daily pain, which is often treated with strong pain medicines called opioids and gabapentinoids for long periods of time. However, no studies have looked at whether these medicines are helpful when used like this. They also often cause side-effects.

Other treatments have been shown to help pain, like exercise and talking therapies. However, little is known about how often people with inflammatory arthritis receive these.

To improve pain for people with inflammatory arthritis, we first need to know how it is currently being treated. This is the focus of the PAIN PATH studies.

University of Aberdeen Research Group Looking for Patient and Public Contributors

The University of Aberdeen Epidemiology Group specialises in research looking at the causes, risk factors and management of rheumatic and musculoskeletal conditions such as arthritis, fibromyalgia and chronic pain.

In their research, collaboration with people with lived experience of these conditions is vital to help them identify the most relevant research priorities, create better study designs, improve management of their research projects, and increase public awareness of their research findings.

They are looking for people with lived experience of musculoskeletal or pain conditions to give input into their research via their Patient and Public Involvement (PPI) group.

They offer a range of opportunities to feed into their work, including:

·        Giving feedback on research questions and plans

·        Providing input on study design

·        Commenting on study documents and questionnaires

·        Helping to shape plain language summaries of research findings

·        Boosting the spread and reach of their research

If you would like to find out more about the work they do, including how you can sign up to stay notified of upcoming public involvement opportunities, please visit their website: https://www.abdn.ac.uk/epippi 

NASS is happy to share research requests but is not responsible for the content of external websites. By following any of these external links you understand that you participate in any research at your own risk and without liability to NASS.