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New VEXAS registry now available to AIDA network clinicians and researchers
VEXAS syndrome (vacuoles, E1 enzyme, X-linked, autoinflammatory, somatic) is a newly discovered monogenic disease of adulthood caused by somatic mutations in UBA1 in hematopoietic progenitor cells.
Myeloid-driven autoinflammation and progressive bone marrow failure lead to substantial morbidity and mortality, while effective medical treatments still need to be identified. The AutoInflammatory Diseases Alliance (AIDA) is ready to take part in this challenge launching a registry specifically focused on VEXAS syndrome. Data collected in the registry will allow the characterization of this recently defined clinical entity, with regard to disease presentation, complications, long-term outcome and therapeutic management.