National registry for patients with VEXAS syndrome

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• 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
• Universitätsmedizin Göttingen
  Göttingen, Germany Recruiting

Study contacts

• Study coordinator: Katja Sockel, Dr. med.
• Email: katja.sockel@ukdd.de
• Phone: +493514585627

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Arumakimig (MAS825) in VEXAS syndrome: 52 weeks to see if it helps people on steroids

  This study tests whether arumakimig can help adults with VEXAS syndrome who are taking glucocorticoids, compared with a placebo, over a year (with an option for a long-term extension).

  Recruiting at 6 sites Phase 2 Novartis · Yokohama, Kanagawa and 5 other locations · NCT07748624

• Assessing the effectiveness of pacritinib for VEXAS syndrome

  This study is testing if the drug pacritinib can help people with VEXAS syndrome manage their symptoms better while reducing their need for steroids.

  Recruiting at 2 sites Phase 2 Swedish Orphan Biovitrum · Scottsdale, Arizona and 38 other locations · NCT06782373

• Using pacritinib to treat VEXAS syndrome

  This study is testing if the drug pacritinib can help people with VEXAS syndrome feel better and manage their symptoms.

  Recruiting Phase 1 Washington University School of Medicine · St Louis, Missouri · NCT06538181

• Registry for hereditary autoinflammatory diseases

  This study is collecting information about hereditary autoinflammatory diseases to see how they affect patients of different ages and genders, with the goal of improving treatment and care for everyone affected.

  Recruiting at 112 sites University of Siena · Algiers and 111 other locations · NCT05200715

• Momelotinib treatment for VEXAS syndrome

  This trial will test whether the oral drug momelotinib helps adults with VEXAS syndrome (with or without myelodysplastic syndrome) who need daily steroids to control inflammation.

  Recruiting at 2 sites Phase 2 Groupe Francophone des Myelodysplasies · Angers and 10 other locations · NCT07098936

• Exploring genetic factors in autoimmune and autoinflammatory diseases

  This study is trying to find out how genes affect autoimmune and autoinflammatory diseases, especially VEXAS syndrome, by looking at samples from patients with known or unknown inflammatory conditions.

  Recruiting at 2 sites NYU Langone Health · New York, New York and 1 other locations · NCT06004349

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.