A cross-sectional survey on VEXAS syndrome: insights from a global expert panel
This is the first clinician survey on VEXAS syndrome, encompassing a global representation of multiple specialties on current disease management, highlighting several unmet needs (longitudinal follow-up, lack of on-label drugs, financial toxicity) actionable for future research. Keypoints • Globally, VEXAS syndrome is being increasingly recognized, and this survey demonstrates real-life physician practices. • The survey identified both hematologists and rheumatologists as the main care providers, amongst other specialties, identifying the need for a multidisciplinary approach in managing patients with VEXAS syndrome. • Diagnostic UBA1 testing was available for more than 75% clinicians with turnaround time < 12 weeks and C-reactive protein was selected as a useful marker of disease relapse. • Treatment modalities were heterogeneous, identifying the need for consensus guidelines.
Authors
- Syed B. Ali (ORCID: https://orcid.org/0000-0002-4103-6953)
- Carmelo Gurnari (ORCID: https://orcid.org/0000-0001-6829-5544)
Institutions
- University of Rome Tor Vergata (IT)
- Cleveland Clinic (US)
- Flinders University (AU)
- University of South Australia (AU)
- Flinders Medical Centre (AU)
- The University of Adelaide (AU)
Publication Details
- Journal
- Clinical Rheumatology
- Published
- 2025-08-09
- DOI
- https://doi.org/10.1007/s10067-025-07617-3
- Primary Topic
- Otitis Media and Relapsing Polychondritis
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Flinders University