Observational Study of Idiopathic Systemic Vasculitis in Children and Adults to Understand Disease Progression, Genetics, and Outcomes

What this Trial Is About

Researchers are studying idiopathic systemic vasculitis, a rare group of diseases that cause inflammation and damage to blood vessels and tissues, affecting both children and adults. These diseases can lead to serious organ damage and have unpredictable relapses. The study aims to understand the signs, symptoms, genetic markers, imaging tests, and blood tests that can help diagnose vasculitis and predict its course over time. Participants include people with known or suspected vasculitis, healthy volunteers, and some related family members. Evaluations include doctor assessments, blood and urine samples, nasal lining biopsies or brushings, and imaging scans of blood vessels using different technologies. Some visits last one to two days, and follow-up visits may occur every three to six months indefinitely. Some tests are done at the NIH, while others involve samples collected by local doctors and sent to NIH. During the study, participants undergo physical exams, laboratory tests, and may complete questionnaires. Imaging and biopsies help researchers study disease mechanisms and outcomes. The research team tracks clinical, radiographic, immunological, and genetic disease characteristics to better understand vasculitis. This long-term study may also identify candidates for future treatment trials. Participation may last many years, with ongoing monitoring and assessments.

Studies of the Natural History, Pathogenesis, and Outcome of Idiopathic Systemic Vasculitis