Journal article
Identifying domains for CNO and SAPHO: A scoping review to create domains from existing outcomes by the OMERACT CNO and SAPHO working group
Seminars in arthritis and rheumatism, Vol.75, 152862
11/13/2025
DOI: 10.1016/j.semarthrit.2025.152862
PMID: 41270570
Abstract
Chronic nonbacterial osteomyelitis (CNO) and synovitis, acne, pustulosis, hyperostosis, and osteitis (SAPHO) syndrome are autoinflammatory bone diseases of unknown etiology that present with bone pain and varying degrees of extraosseous manifestations such as skin, intestinal and joint involvement. Currently, there are no validated outcome measurement sets that represent the input from all collaborating groups.
The OMERACT CNO & SAPHO working group performed a scoping review to identify domains previously used in CNO and SAPHO clinical studies. The list of potential domains was narrowed through a process of binning and winnowing.
A scoping review included 260 observational studies published from 1978 -2020 and 220 domains were initially identified. Domains were reduced to 25 through a binning and winnowing process. Domains cover each of the OMERACT core with most domains mapped to life impact and pathophysiological manifestations.
We identified 25 potential domains covering health concepts of function, disease manifestations, pain, and impact on mental health and societal participation to be included in the final core domain set. The next step will be to reach a consensus on the final CNO & SAPHO core domain set and begin instrument selection.
Details
- Title: Subtitle
- Identifying domains for CNO and SAPHO: A scoping review to create domains from existing outcomes by the OMERACT CNO and SAPHO working group
- Creators
- Melissa Oliver - Indiana University School of MedicineFarzana Nuruzzaman - Stony Brook UniversityAleksander Lenert - University of IowaArundathi Jayatilleke - Temple UniversityAlexander Theos - Georgetown UniversityNatalia Palmou-Fontana - Marqués de Valdecilla University HospitalAlissa Skinner - OMERACT Patient/parent research partner, USAMarinka Twilt - University of CalgaryEveline Y. Wu - University of North Carolina at Chapel HillCassyanne Aguiar - Children's Hospital of The King's DaughtersSamir Shah - Rheumatology Center, Mobility Bone & Joint Institute, Division of Northeast Orthopaedic Alliance, Andover, MA, USAMicol Romano - University of LondonSuzanne Li - Hackensack University Medical CenterSivia Lapidus - Hackensack University Medical CenterJenna King - OMERACT Patient/parent research partner, USASierra Gerber - OMERACT Patient/parent research partner, USABethany Welc - OMERACT Patient/parent research partner, USALindsey Bergstrom - OMERACT Patient/parent research partner, USAEmily Fox - Children's Mercy HospitalMatthew Hollander - University of Vermont Medical CenterGabriele Simonini - Meyer Children's HospitalAlhanouf Alsaleem - King Faisal Specialist Hospital & Research CentreKarmela Kim Chan - Weill Cornell MedicineRon Laxer - University of TorontoKaren Onel - Hospital for Special SurgerySeza Ozen - Hacettepe UniversityFatma Dedeoglu - Boston Children's HospitalPolly Ferguson - University of IowaPhilip Helliwell - University of LeedsBeverley Shea - University of OttawaChristian Hedrich - Alder Hey Children's NHS Foundation TrustJonathan Akikusa - Royal Children's HospitalPhilip Mease - University of WashingtonYongdong Zhao - University of Washington School of Medicine
- Resource Type
- Journal article
- Publication Details
- Seminars in arthritis and rheumatism, Vol.75, 152862
- DOI
- 10.1016/j.semarthrit.2025.152862
- PMID
- 41270570
- NLM abbreviation
- Semin Arthritis Rheum
- ISSN
- 0049-0172
- eISSN
- 1532-866X
- Publisher
- Elsevier Inc
- Language
- English
- Date published
- 11/13/2025
- Academic Unit
- Stead Family Department of Pediatrics; Rheumatology, Allergy, and Immunology; Immunology; Internal Medicine
- Record Identifier
- 9985033763502771
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