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| Name | Class |
|---|---|
| Bristol-Myers Squibb | INDUSTRY |
| University Hospital Munich | OTHER |
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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
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| Measure | Description | Time Frame |
|---|---|---|
| Collection of epidemiological data on VEXAS | incidence, age and sex distribution in adults in Germany | enrollment |
| Collection and monitoring of initial disease manifestations |
| 5 years |
| Documentation of the treatment approaches and therapy sequences | Documentation of the treatment approaches and therapy sequences | 5 years |
| Analysis of clinical-relevant clinical endpoints | complete remission (CR), hematological and clinical remission, molecular remissions, treatment-free remission (TFR) | 5 years |
| Measure | Description | Time Frame |
|---|---|---|
| Describe disease cluster |
| 5 years |
| Laboratory diagnostics |
|
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Katja Sockel, Dr. med. | Contact | +493514585627 | katja.sockel@ukdd.de | |
| Katharina Goetze, Prof. | Contact | +498941404618 | katharina.goetze@tum.de |
| Name | Affiliation | Role |
|---|---|---|
| Katja Sockel, Dr. med. | TU Dresden | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Universitätsklinikum Aachen | Recruiting | Aachen | Germany | |||
| Klinikum Chemnitz gGmbH |
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| Label | URL |
|---|---|
| Website VEXAS Registry | View source |
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18 mL whole blood (peripheral venipuncture) and 9 ml bone marrow
| 5 years |
| Correlation clinical endpoints with treatment approaches | Correlation clinical endpoints with treatment approaches | 5 years |
| Quality of life data (QoL), fatigue questionnaire (Facit-F) | Quality of life data (QoL), fatigue questionnaire (Facit-F) | 5 years |
| Accompanying translational research |
| 5 years |
| Collection of Biospecimens | Collection of Biospecimens | 5 years |
| Recruiting |
| Chemnitz |
| Germany |
| Universitätsklinikum Carl Gustav Carus | Recruiting | Dresden | 01307 | Germany |
|
| Universitätsklinikum Düsseldorf | Recruiting | Düsseldorf | Germany |
| Evang. Kliniken Essen-Mitte | Recruiting | Essen | Germany |
| Universitätsmedizin Göttingen | Recruiting | Göttingen | Germany |
| Universitätsklinikum Hamburg-Eppendorf | Recruiting | Hamburg | Germany |
| Universitätsklinikum Jena | Recruiting | Jena | Germany |
| Universitätsklinikum Leipzig AöR | Recruiting | Leipzig | Germany |
| Universitätsmedizin Mannheim | Recruiting | Mannheim | Germany |
| Klinikum rechts der Isar TUM | Recruiting | München | Germany |
| Klinikum Nürnberg, Campus Nord | Recruiting | Nuremberg | Germany |
| Klinikum Osnabrück GmbH | Recruiting | Osnabrück | Germany |
| Helios Kliniken Schwerin GmbH | Recruiting | Schwerin | Germany |
| Robert Bosch Gesellschaft für Medizinische Forschung mb | Recruiting | Stuttgart | Germany |
| Krankenhaus der Barmherzigen Brüder | Recruiting | Trier | Germany |
| Universitätsklinikum Tübingen | Recruiting | Tübingen | Germany |
| ID | Term |
|---|---|
| C000721467 | VEXAS syndrome |
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