An observational study in VEXAS Syndrome, sponsored by Technische Universität Dresden. Recruiting at 17 sites in Germany. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-05-15.
Sponsored by Technische Universität Dresden · Observational
The aim is rapid collection of real-life data on the epidemiology, treatment and disease course in patients with VEXAS syndrome during routine clinical practice and collect biomaterials to evaluate genotype-phenotype associations, determine optimal treatment schedule, identify diagnostic features and biomarkers
see brief summary
Exclusion Criteria:
Collection of epidemiological data on VEXAS
incidence, age and sex distribution in adults in Germany
Time frame: enrollment
Collection and monitoring of initial disease manifestations
* spectrum and frequency of inflammatory manifestations * Association with hematological (pre)malignancies (MDS, Myeloma, MGUS, CHIP) * Monitor cardiovascular risk/thromboembolic events
Time frame: 5 years
Documentation of the treatment approaches and therapy sequences
Documentation of the treatment approaches and therapy sequences
Time frame: 5 years
Analysis of clinical-relevant clinical endpoints
complete remission (CR), hematological and clinical remission, molecular remissions, treatment-free remission (TFR)
Time frame: 5 years
Describe disease cluster
* Phenotype cluster? * Genotype-phenotype associations? * Identification of biomarker?
Time frame: 5 years
Laboratory diagnostics
* Establish Diagnostic FACS signature * Establish biomarker for disease monitoring * Molecular characterization of the key regulatory gene UBA1, but also accompanying molecular mutations * Correlation with HLA polymorphisms * Coagulation Diagnostics
Time frame: 5 years
Correlation clinical endpoints with treatment approaches
Correlation clinical endpoints with treatment approaches
Time frame: 5 years
Quality of life data (QoL), fatigue questionnaire (Facit-F)
Quality of life data (QoL), fatigue questionnaire (Facit-F)
Time frame: 5 years
Accompanying translational research
* Metabolic signature * Inflammatory signature * Microbiome * Identify disease trigger /risc factors for disease onset
Time frame: 5 years
Collection of Biospecimens
Collection of Biospecimens
Time frame: 5 years
Plan to share: No
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VEXAS syndrome
Technische Universität Dresden