Establishing core domain sets for Chronic Nonbacterial Osteomyelitis : A report from the OMERACT 2020 special interest group

Melissa Oliver; Aruni Jayatilleke; Eveline Wu; Farzana Nuruzzaman; Cassyanne Aguiar; Aleksander Lenert; Micol Romano; Gabriele Simonini; Samir Shah; Matthew Hollander; Alhanouf Alsaleem; Emily Fox; Alexander Theos; Athimalaipet V Ramanan; Anja Schnabel; Sivia Lapidus; Lori Tucker; Karen Onel; Seza Ozen; Fatma Dedeoglu; Polly J Ferguson; Beverley Shea; Jonathan Akikusa; Christian Hedrich; Philip Mease; Yongdong Zhao

doi:10.1016/j.semarthrit.2021.05.015

Keywords Chronic nonbacterial osteomyelitis; Synovitis; Acne; Pustulosis; Hyperostosis; Osteitis; OMERACT; Outcome research Objective A working group was established to develop a core domain set (CDS) for Chronic Nonbacterial Osteomyelitis (CNO) and Synovitis, Acne, Pustulosis, Hyperostosis, Osteitis (SAPHO) following the OMERACT filter 2.1. Methods A scoping review to identify disease-related manifestations was performed, followed by a special interest group (SIG) session at OMERACT2020 to begin the CNO/SAPHO CDS framework. Results Candidate items were identified from the scoping review and most fell under Life Impact and Pathophysiology Manifestation core areas. A SIG agreed on the need to develop a CDS for CNO and SAPHO (100%) and for children and adults (91%). Conclusion Based on candidate items identified, qualitative research and Delphi surveys will be performed as next steps. Abbreviations CNO, Chronic nonbacterial osteomyelitis; CDS, Core Domain Set; OMERACT, Outcome Measures in Rheumatology; SIG, Special Interest Group; SAPHO, Synovitis, Acne, Pustulosis, Hyperostosis, Osteitis Author Affiliation: (a) Division of Pediatric Rheumatology, Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA (b) Rheumatology, Department of Medicine, Lewis Katz School of Medicine at Temple University, Philadelphia, PA (c) Division of Pediatric Rheumatology, Department of Pediatrics, The University of North Carolina, Chapel Hill, NC, USA (d) Division of Pediatric Rheumatology, Department of Pediatrics, Renaissance School of Medicine at Stony Brook University, Stony Brook Children's Hospital, Stony Brook, NY, USA (e) Division of Pediatric Rheumatology, Department of Pediatrics, Children's Hospital of The King's Daughters, Eastern Virginia Medical School, Norfolk, VA, USA (f) Division of Immunology, Department of Internal Medicine, University of Iowa Hospitals & Clinics, Iowa City, IA, USA (g) Division of Rheumatology, ASST Gaetano Pini, Milan, Italy (h) Division of Paediatric Rheumatology, Department of Paediatrics, Schulich School of Medicine & Dentistry, University of Western Ontario, London, ON, Canada (i) Rheumatology Unit, Meyer Children Hospital, University of Florence, Florence, Italy (j) Division of Rheumatology, Department of Medicine, Tufts Medical Center, Boston, Massachusetts, USA (k) Pediatric Rheumatology, University of Vermont Medical Center, Burlington, VT, USA (l) Departments of Pediatric Rheumatology, King Faisal Specialist Hospital and Research Centre, Riyadh, Saudi Arabia (m) Pediatric Rheumatology, Children's Mercy Hospital, Kansas City, Missouri, USA (n) CRMO Patient/parent Partner (o) Department of Human Science, Georgetown University, Washington, DC, USA (p) Department of Paediatric Rheumatology, University Hospitals Bristol NHS Foundation Trust and Translational Health Sciences, University of Bristol, Bristol, UK (q) Pediatric Rheumatology and Immunology, Department of Pediatrics, Universitätsklinikum Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany (r) Division of Pediatric Rheumatology, Department of Pediatrics, Joseph M. Sanzari Children's Hospital, Hackensack University Medical Center and Hackensack Meridian School of Medicine, Hackensack, New Jersey, USA (s) Division of Rheumatology, Department of Pediatrics, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada (t) Division of Pediatric Rheumatology, Hospital for Special Surgery, NY, NY, USA (u) Division of Pediatric Rheumatology, Department of Pediatrics, Hacettepe University, Ankara, Turkey (v) Division of Immunology, Rheumatology Program, Department of Pediatrics, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA (w) Stead Family Department of Pediatrics, University of Iowa Carver College of Medicine, Iowa City, IA, USA (x) Division of Rheumatology, Department of Medicine, Ottawa hospital Research Institute, School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, Ottawa, Canada (y) Rheumatology Service Department of General Medicine Royal Children's Hospital, Melbourne, Australia (z) Department of Women's & Children's Health, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK (aa) Department of Pediatric Rheumatology, Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK (ab) Department of Rheumatology, Swedish Medical Center, Providence St Joseph Health and University of Washington, Seattle, WA, USA (ac) Pediatric Rheumatology, Seattle Children's Hospital, University of Washington, Seattle, WA, USA * Corresponding author at: 699 Riley Hospital Drive, Ste 307, Indianapolis, IN 46204, USA. Byline: Melissa Oliver [msoliver@iu.edu] (a,*), Aruni Jayatilleke (b), Eveline Wu (c), Farzana Nuruzzaman (d), Cassyanne Aguiar (e), Aleksander Lenert (f), Micol Romano (g,h), Gabriele Simonini (i), Samir Shah (j), Matthew Hollander (k), Alhanouf Alsaleem (l), Emily Fox (m), Alexander Theos (n,o), Athimalaipet V Ramanan (p), Anja Schnabel (q), Sivia Lapidus (r), Lori Tucker (s), Karen Onel (t), Seza Ozen (u), Fatma Dedeoglu (v), Polly J Ferguson (w), Beverley Shea (x), Jonathan Akikusa (y), Christian Hedrich (z,aa), Philip Mease (ab), Yongdong Zhao (ac)

Establishing core domain sets for Chronic Nonbacterial Osteomyelitis : A report from the OMERACT 2020 special interest group

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