National registry for patients with VEXAS syndrome
Multicenter, Interdisciplinary National VEXAS Registry With Accompanying Biomaterial Collection
Technische Universität Dresden · NCT06377462
This study is collecting real-life information from adults with VEXAS syndrome to see how the disease behaves, what treatments work best, and to find important markers for diagnosis.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Technische Universität Dresden (other) |
| Locations | 13 sites (Aachen and 12 other locations) |
| Trial ID | NCT06377462 on ClinicalTrials.gov |
What this trial studies
This study aims to rapidly collect real-life data on the epidemiology, treatment, and disease course of patients with VEXAS syndrome during routine clinical practice. It will also gather biomaterials to evaluate genotype-phenotype associations, determine optimal treatment schedules, and identify diagnostic features and biomarkers. The study is observational and involves multiple centers across the country, focusing on patients aged 18 and older who meet specific clinical and hematological criteria for VEXAS syndrome.
Who should consider this trial
Good fit: Ideal candidates for this study are adults aged 18 and older with established or suspected VEXAS syndrome.
Not a fit: Patients who are unable to understand the nature and scope of participation in this registry will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of VEXAS syndrome and improve treatment strategies for affected patients.
How similar studies have performed: While this approach is observational and focuses on data collection, similar studies have successfully improved understanding and management of rare diseases.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients with established or suspected (clinical and hematological criteria) VEXAS Syndrome * Age ≥18 years * Signed informed consent form Exclusion Criteria: * patients who are not in a position to understand the nature and scope of participation in this register
Where this trial is running
Aachen and 12 other locations
- Universitätsklinikum Aachen — Aachen, Germany (RECRUITING)
- Klinikum Chemnitz gGmbH — Chemnitz, Germany (RECRUITING)
- Universitätsklinikum Carl Gustav Carus — Dresden, Germany (RECRUITING)
- Universitätsklinikum Düsseldorf — Düsseldorf, Germany (RECRUITING)
- Evang. Kliniken Essen-Mitte — Essen, Germany (RECRUITING)
- Universitätsklinikum Hamburg-Eppendorf — Hamburg, Germany (RECRUITING)
- Universitätsklinikum Leipzig AöR — Leipzig, Germany (RECRUITING)
- Universitätsmedizin Mannheim — Mannheim, Germany (RECRUITING)
- Klinikum rechts der Isar TUM — München, Germany (RECRUITING)
- Klinikum Osnabrück GmbH — Osnabrück, Germany (RECRUITING)
- Helios Kliniken Schwerin GmbH — Schwerin, Germany (RECRUITING)
- Robert Bosch Gesellschaft für Medizinische Forschung mb — Stuttgart, Germany (RECRUITING)
- Krankenhaus der Barmherzigen Brüder — Trier, Germany (RECRUITING)
Study contacts
- Study coordinator: Katja Sockel, Dr. med.
- Email: katja.sockel@ukdd.de
- Phone: +493514585627
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: VEXAS Syndrome, VEXAS