Research
Development and implementation of the AIDA international registry for patients with VEXAS Syndrome
Recently, a paper describing design, construction, and modalities of dissemination of the AIDA International Registry for patients with VEXAS syndrome, has published.
Link to article DOI: 10.3389/fmed.2022.926500
The Registry is designed to fully describe patient’s details about demographics, clinical manifestations, symptoms, histologic details about skin and bone marrow biopsies and aspirate, laboratory features, complications, comorbidities, therapies, and healthcare access. The article is focused on aim and methodology of the Registry, which will allow the achievement of a comprehensive knowledge about this new disease, with the final goal to obtain real-world evidence for daily clinical practice, especially in relation to the comprehension of this disease about the natural history and the possible therapeutic approaches.