Daily Real-Life Monitoring of Burden in Adults with Hereditary Angioedema Using Smartphone Surveys

What this Trial Is About

Researchers are investigating the daily burden experienced by patients with Hereditary Angioedema HAE, a rare genetic disorder causing unpredictable swelling attacks that can affect various body parts and impact quality of life in many ways. This study aims to capture a more accurate and dynamic understanding of how HAE affects patients by using real-time digital surveys and standardized questionnaires over an 8-week period, rather than relying on traditional retrospective assessments that may miss daily fluctuations and emotional impacts. Participants will use a smartphone app to complete brief digital surveys every other day for 8 weeks. These surveys ask about physical symptoms, social and work-related challenges, and emotional states related to HAE. The study uses Ecological Momentary Assessment EMA, which collects data in real life and reduces recall bias. Standard questionnaires measuring angioedema activity, quality of life, and disease control will also be completed at 4 and 8 weeks. During the study, participants will answer online surveys that assess emotional burden, socio-occupational impairment, disease activity, anxiety, depression, and work productivity. Researchers will analyze these real-time data along with traditional questionnaire results to better understand how the burden of HAE fluctuates day by day. The study will monitor participants for 8 weeks, with repeated assessments to capture detailed patterns of disease impact and emotional well-being.

Real-life Ecological Momentary Assessment of Lived Burden in Hereditary AngioEdema