£3M study led by patient voices targets pain in inflammatory arthritis

The Arthritis UK TOPPIA (Targeting of Peripheral Pain in Inflammatory Arthritis) consortium, led by King’s College London researchers and funded by Arthritis UK, will combine patients’ lived experience alongside multidisciplinary expertise, to achieve precision pain management that addresses individual needs.

Inflammatory arthritis affects more than one in 100 people, both adults and children. It occurs when the immune system mistakenly attacks the joints, causing inflammation experienced as swelling, stiffness, and pain. Current medical approaches for inflammatory arthritis largely focus on tackling inflammation, with pain not always being prioritised. This means that people with inflammatory arthritis do not always receive treatments that are appropriate for both their inflammation and their pain.

Lead researchers Professor Leonie Taams and Dr Franziska Denk, both from King’s College London, said: “Pain is one of the most devasting symptoms for many people living with arthritis. It requires a large, united effort, where everyone is pulling in the same direction to improve drug development, patient stratification, and advocacy.

Together, we will deepen our understanding of the drivers of pain, identify new therapeutic targets, improve treatment strategies and champion the inclusion of paid as a core priority in both research and clinical care for inflammatory arthritis. This is what this Arthritis UK funding will us to do: work together across the UK towards a future free from arthritis pain.”

The study will take a four-stage approach:

• test new treatment targets for pain
• create a biobank of joint samples to study clinical information on pain
• improve tailored diagnosis and care
• advocate for pain to be prioritised in care and research

Professor Lucy Wedderburn, Professor of Paediatric Rheumatology at GOSH and UCL Great Ormond Street Institute of Child Health (UCL GOS ICH), and Dr Polly Livermore, NIHR Advanced Clinical and Practitioner Academic Nursing Fellow at Great Ormond Street Hospital and UCL GOS ICH, will co-lead on the work with children and young people living with arthritis, which is known as juvenile idiopathic arthritis.

Professor Lucy Wedderburn said: "This exciting project will address a very important area for children and young people with arthritis, to try and understand the underlying causes of pain in arthritis which can persist even after the inflammation appears to have gone.

"We are delighted that we can contribute from UCL and Great Ormond Street Hospital to this important work to enable the benefits to be delivered to children at the same time as adults living with arthritis.”

When children, young people and adults with arthritis are undergoing clinical care, inflammation and pain are often assumed to be interlinked. But for many people, medical tests can suggest reduced inflammation but do not measure whether pain symptoms persist. This means in some cases, someone’s arthritis is classed as in remission, but they continue to struggle with daily pain that impacts their quality of life. This oversight can discourage patients from raising their pain symptoms with healthcare professionals, due to a fear of being dismissed, the researchers say.

The project also includes children and young people as well as adults in this novel research, so that people of all ages living with arthritis can benefit as rapidly as possible from any new discoveries.

Professor Lucy Donaldson, Arthritis UK’s Director of Research, said: “We are delighted to be funding this foundational research which will address a critical yet often overlooked clinical need: chronic pain.

“The pain of arthritis can severely impact both mental and physical health.

“Our recent lived experience survey showed that six in 10 people are living in pain most or all of the time due to their arthritis.

“By placing patients’ voices at the heart of the study, this research embodies all the values that Arthritis UK stands for as we are committed to make real, impactful improvements for all people living with arthritis and this is a great step in that direction.”

The TOPPIA consortium is made up of researchers from King’s College London, Guy’s and St Thomas’ NHS Foundation Trust, King’s College Hospital NHS Foundation Trust, UCL Great Ormond Street Institute of Child Health, Great Ormond Street Hospital for Children NHS Foundation Trust, Cardiff University, University of Oxford, University of Birmingham, University of Glasgow and America’s The Rockefeller University.

The five-year study, funded by a £3m grant from Arthritis UK, will start in Autumn 2026.