International Registry for Patients with Isolated Angioedema Including Hereditary and Acquired Types

What this Trial Is About

Angioedema is a condition involving swelling that lasts 1 to 5 days and affects the skin under the surface or the digestive and throat areas. This swelling can be dangerous if it occurs in the throat, potentially causing difficulty breathing. Some angioedema cases are allergic and occur with hives, while others are non-allergic without hives and may be hereditary or acquired. Because these types of angioedema are rare, this registry aims to collect data from many patients with recurring angioedema without hives in one place for better understanding. The study is an observational registry coordinated by the Grenoble center, which works with associated centers across France. These centers collect and enter patient information into an electronic system and help patients use a mobile app to track their angioedema episodes. The registry includes different types of angioedema, such as hereditary forms with or without C1 inhibitor deficiency, acquired angioedema, drug-induced angioedema, and mast cell induced angioedema. The coordinating center organizes scientific meetings and manages data requests. Participants provide data over a five-year period, including demographic details, clinical features, coexisting conditions, angioedema diagnosis, duration and severity of attacks, and treatments used during attacks and for prevention. Investigators validate patient-reported episodes through electronic diaries. The registry monitors this information regularly, with associated centers updating the coordinator twice a year on patient enrollments and data quality. This long-term data helps researchers better characterize isolated angioedema cases.

CLOUD-R HAE REGISTRY