About
Juvenile idiopathic arthritis (JIA) is the most common rheumatologic disease of childhood and a cause of acquired disability. Multiple outcome measurement sets are currently used in studies of JIA.
Since 2015, the OMERACT JIA Core Set Working Group has obtained global stakeholder input from patients with JIA, caregivers, healthcare providers (HCP), and researchers to update the JIA Core Domain Set.
Current Stage in the OMERACT Process
Building on the discussions in Terrassa, our next steps include selecting two overall domains (disease activity and quality of life) and an organ-specific domain (number of oral ulcers) as a starting point for OMERACT Instrument Selection Part A. In addition, we are laying the groundwork for a new Behçet’s-specific quality of life index.
Latest Update
We are completing a systematic literature review of available validated pediatric instruments that may match the ""overall well-being"" domain description and definition. The purpose of our current review is to create a “pool” of instruments that will be put through the OMERACT instrument filter process and recommended for use in measurement.
Review status – we are in the full text review portion of the work with <20 more texts to review and are looking for help with this project. Involved parties will be given authorship on future publications based on this review"
Recent Milestones Achieved
At the 2023 OMERACT conference the JIA working group reached agreement on the domain definition and descriptions for overall wellbeing which is within the core domain set of the OMERACT onion. The results were published in Seminars in Arthritis and Rheumatism in 2024. Balay-Dustrude, E, Christensen, R, Consolaro et al. Defining patient perception of overall well-being and disease activity in the OMERACT Juvenile Idiopathic Arthritis (JIA) core domain set: A report from the JIA working group.
Upcoming Activities and Deliverables
The next step for this work is instrument selection for this core domain.
Once our review is complete, we will be administering a survey for the JIA working group and JIA patient and families on a few selected instruments. Our goal is for this survey to go out late spring/early summer 2025.
Meet the Team
Alessandro Consolaro, Italy
Chair
Esi Morgan, USA
Chair
Jane Munro, Australia
Chair
Erin Balay-Dustrude, USA
Emerging Leader
Ben Horgan, Australia
Patient Research Partner
Jennifer Horonjeff, USA
Patient Research Partner
OMERACT Endorsed Core Domain Set for Juvenile Idiopathic Arthritis
Recent Publications
- Balay-Dustrude, Erin, et al. “Defining Patient Perception of Overall Well-Being and Disease Activity in the OMERACT Juvenile Idiopathic Arthritis (JIA) Core Domain Set: A Report from the JIA Working Group.” Seminars in Arthritis and Rheumatism, vol. 64, 152340, 2024, https://doi.org/10.1016/j.semarthrit.2023.152340.
- Morgan, Esi M., et al. “Establishing an Updated Core Domain Set for Studies in Juvenile Idiopathic Arthritis: A Report from the OMERACT 2018 JIA Workshop.” Journal of Rheumatology, vol. 46, no. 8, 2019, pp. 1006–13, https://doi.org/10.3899/jrheum.181088.
- Morgan, Esi M., et al. “Evidence for Updating the Core Domain Set of Outcome Measures for Juvenile Idiopathic Arthritis: Report from a Special Interest Group at OMERACT 2016.” Journal of Rheumatology, vol. 44, no. 12, 2017, pp. 1884–88, https://doi.org/10.3899/jrheum.161389.