TY - JOUR T1 - Evidence for Updating the Core Domain Set of Outcome Measures for Juvenile Idiopathic Arthritis: Report from a Special Interest Group at OMERACT 2016 JF - The Journal of Rheumatology JO - J Rheumatol DO - 10.3899/jrheum.161389 SP - jrheum.161389 AU - Esi M. Morgan AU - Meredith P. Riebschleger AU - Jennifer Horonjeff AU - Alessandro Consolaro AU - Jane E. Munro AU - Susan Thornhill AU - Timothy Beukelman AU - Hermine I. Brunner AU - Emily L. Creek AU - Julia G. Harris AU - Daniel B. Horton AU - Daniel J. Lovell AU - Melissa L. Mannion AU - Judyann C. Olson AU - Homaira Rahimi AU - Maria Chiara Gallo AU - Serena Calandra AU - Angelo Ravelli AU - Sarah Ringold AU - Susan Shenoi AU - Jennifer Stinson AU - Karine Toupin-April AU - Vibeke Strand AU - Clifton O. Bingham III Y1 - 2017/08/15 UR - http://www.jrheum.org/content/early/2017/08/15/jrheum.161389.abstract N2 - Objective The current Juvenile Idiopathic Arthritis (JIA) Core Set was developed in 1997 to identify the outcome measures to be used in JIA clinical trials using statistical and consensus-based techniques, but without patient involvement. The importance of patient/parent input into the research process has increasingly been recognized over the years. An Outcome Measures in Rheumatology (OMERACT) JIA Core Set Working Group was formed to determine whether the outcome domains of the current core set are relevant to those involved or whether the core set domains should be revised. Methods Twenty-four people from the United States, Canada, Australia, and Europe, including patient partners, formed the working group. Guided by the OMERACT Filter 2.0 process, we performed (1) a systematic literature review of outcome domains, (2) a Web-based survey (142 patients, 343 parents), (3) an idea-generation study (120 parents), (4) 4 online discussion boards (24 patients, 20 parents), and (5) a Special Interest Group (SIG) activity at the OMERACT 13 (2016) meeting. Results A MEDLINE search of outcome domains used in studies of JIA yielded 5956 citations, of which 729 citations underwent full-text review, and identified additional domains to those included in the current JIA Core Set. Qualitative studies on the effect of JIA identified multiple additional domains, including pain and participation. Twenty-one participants in the SIG achieved consensus on the need to revise the entire JIA Core Set. Conclusion The results of qualitative studies and literature review support the need to expand the JIA Core Set, considering, among other things, additional patient/parent-centered outcomes, clinical data, and imaging data. ER -