RT Journal Article SR Electronic 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 FD The Journal of Rheumatology SP 1884 OP 1888 DO 10.3899/jrheum.161389 VO 44 IS 12 A1 Esi M. Morgan A1 Meredith P. Riebschleger A1 Jennifer Horonjeff A1 Alessandro Consolaro A1 Jane E. Munro A1 Susan Thornhill A1 Timothy Beukelman A1 Hermine I. Brunner A1 Emily L. Creek A1 Julia G. Harris A1 Daniel B. Horton A1 Daniel J. Lovell A1 Melissa L. Mannion A1 Judyann C. Olson A1 Homaira Rahimi A1 Maria Chiara Gallo A1 Serena Calandra A1 Angelo Ravelli A1 Sarah Ringold A1 Susan Shenoi A1 Jennifer Stinson A1 Karine Toupin-April A1 Vibeke Strand A1 Clifton O. Bingham III YR 2017 UL http://www.jrheum.org/content/44/12/1884.abstract AB 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.