Partners in TRICIA
At TRICIA, we believe the most impactful research is done with patients and families, not just about them.
Our work in childhood inflammatory arthritis is driven by a genuine commitment to understanding what matters most to children, young people and families affected by JIA. That’s why we place patient and family involvement at the heart of everything we do — from shaping research priorities to co-developing study materials and training tools.
Why patient and family voices matter
Patients and family involvment ensures our research is relevant, respectful, and ultimately more effective. Whether it’s reviewing study materials, helping design protocols, or offering insights as part of our Steering Committee, the lived experience of children, young people and families brings clarity and focus to our work.
We work in partnership with:
Parents and young people living with JIA
Organisations such as Your Rheum, JIA@NRAS, and the CLUSTER Patient and Parent Champions
Clinical and academic leaders across the UK
“Being part of TRICIA has allowed me to make sure the patient voice is part of decision-making from the start.”
— Parent representative, MAPJAG
What our patient partners help us with
Study design – advising on what’s feasible and important
Creating lay materials – for families, young people and clinicians
Training resources – co-producing age-appropriate, accessible content
Shaping priorities – helping us focus on what matters to families
Governance – sitting on our Steering and Management Committees
Examples of patient involvement so far
In the MAPJAG study, patient and family feedback directly shaped how synovial biopsy procedures were explained and when they were offered.
We co-developed patient information materials and video content with parent representatives.
We’ve held dedicated PPI workshops to review age-appropriate patient-reported outcome measures (PROMs) and safety reporting tools.
Jasmine and Sophie’s Story – In their own words, Jasmine and Sophie explain why JIA research is so important and how it can make a difference for young people like them..
Amy’s Journey – Amy shares what it was like to grow up with JIA, reflecting on her diagnosis, treatments, and the impact of research on her life.
Get Involved
We welcome interest from anyone with lived experience of JIA — whether you’re a young person, parent, carer, or former patient.
You don’t need any special experience to join us — just a willingness to share your thoughts and work collaboratively.
[Register your interest here] (Link to form coming soon!)
