Patients, parents and researchers recently came together to help shape the next stage of research building on the MAPJAG study.
We are grateful to those who shared their experiences and perspectives.
Lizzy Rosser from University College London presented early ideas for a new grant application based on findings from the MAPJAG study. The proposed work aims to better understand differences between children with arthritis, with the goal of supporting more targeted treatment approaches.
The session focused on gathering feedback at an early stage, before the proposal is finalised. Participants explored how key concepts are explained, how clinical questions are framed, and what outcomes matter most to families.
A clear message from the discussion was the importance of focusing on impact. Participants emphasised that explanations should link back to how research could improve treatment and outcomes, particularly for those who do not respond to current therapies.
The discussion also highlighted the complexity of lived experience, including variation in age of onset, time to diagnosis and disease subtype. These insights will help refine both the research questions and how the work is communicated.
This input will directly inform the development of the grant application and the wider programme of work. It also shows how findings from MAPJAG are already being used to generate new research questions and shape future studies, including programmes such as ARCADIA.
This reflects the wider aim of the TRICIA network to support research that is both scientifically robust and shaped by patient experience.
