On 7 October 2025, members of the TRICIA Network joined a special Your Rheum session to talk with young people about ultrasound-guided synovial biopsy. Your Rheum is a group for 11-24 year olds across the UK with diagnosed rheumatic conditions, where you can advise, input and shape current adolescent and young adult rheumatology research. Although the procedure has been discussed with children and adults in the past, this was the first time it had been explored specifically with adolescents and young adults.
The online meeting brought together fourteen young people aged 15 to 25 (mostly female), Your Rheum representatives Catherine Wright and Dr Victoria Harbottle, and researchers including Professor Coziana Ciurtin, Professor Adam Croft, Dr Charlene Foley, Dr Christine Bolton and Dr Laura Scagnellato.
Why biopsies are used in JIA research
The discussion was particularly timely because University College London Hospitals (UCLH), led by Professor Ciurtin, is joining the TRICIA Network as a new recruiting site. UCLH’s adolescent clinic will play an important role in offering biopsies to young people with Juvenile Idiopathic Arthritis (JIA), so hearing their views directly was an important step in shaping how the procedure is introduced and explained.
Researchers outlined why biopsies are used in JIA research. Studying the synovial tissue lining the joint, where inflammation occurs, can help scientists understand how the disease develops and how future treatments might be tailored more precisely.
They explained that the minimally invasive procedure is carried out under ultrasound guidance through a small skin entry point. For young people, the biopsy would be performed under local anaesthetic rather than general anaesthetic, and Entonox may also be offered to help with comfort. Importantly, researchers reassured participants that the small piece of tissue collected does not affect normal joint function.
Questions raised by young people
Young people asked practical and thoughtful questions. They wanted to know whether general anaesthesia could ever be used, when steroid injections are given in relation to the biopsy, and whether the procedure would be offered as part of treatment or purely for research.
They also asked how clinicians distinguish between tissue important for joint function and tissue involved in inflammation, and whether biopsies can be performed during remission or only during a flare. Others were interested in what symptoms might occur afterwards and how long the technique has been used in clinical practice.
Poll results from the session
A quick emoji poll gave insight into attitudes towards different types of studies:
- Twelve said they would take part in a biopsy study, with two unsure
- Seven would agree to a biopsy while their arthritis was controlled, three would not, and one was unsure
- Only three would join a drug trial involving biopsies before and after treatment, while eight said no, largely due to concerns about untested drugs
- Seven would join a medication stop study with biopsy, and ten said they would agree to a repeat biopsy after a flare
The discussion suggested that young people see greater value in biopsies when they are linked to a personal clinical decision, such as stopping medication, rather than when they are part of purely observational research. This insight will help shape how research opportunities are presented in adolescent clinics at UCLH and other TRICIA sites.
What information young people want
Participants also shared what information would help them feel more comfortable about the procedure. They wanted to know which joints are suitable for biopsy, whether smaller joints can be sampled, and whether this makes the procedure more difficult. They also asked whether findings from their own biopsy could be shared with them, and raised common anxieties about needles and blood tests.
Several participants suggested that a short video showing each stage of the procedure would be particularly helpful. Seeing what happens step by step, including the sounds, sensations and what to expect afterwards, could help reduce anxiety and make the experience feel more predictable.
Another question touched on how biopsy findings might guide treatment or help predict response to therapy, and whether this could lead to more personalised approaches in the future. Although time ran out before this could be explored in depth, it reflected a strong interest in how tissue research might ultimately improve care.
Shaping how biopsies are introduced
Feedback from this Your Rheum session will directly inform how biopsies are introduced to young people at UCLH. The procedure will be offered under local anaesthetic only, with clear explanations about each stage of the process, including when steroid injections may be given and what sensations to expect.
The TRICIA Network will also work with Your Rheum and other patient partners to co-create short, age-appropriate explainer videos and visual resources showing exactly what happens during the biopsy. These materials will support informed decision-making and help young people feel more confident about what to expect.
The TRICIA team would like to thank the Your Rheum members for their openness, thoughtful questions and constructive feedback. Their input is already shaping how biopsies are discussed with young people and will help ensure that future research reflects their priorities.