Real-life Ecological Momentary Assessment of Lived Burden in Hereditary AngioEdema
Istituti Clinici Scientifici Maugeri SpA
30 participants
Feb 23, 2026
OBSERVATIONAL
Conditions
Summary
The aim of this study is to conduct an in-depth analysis of the Burden of Disease (BoD) perceived by patients with Hereditary Angioedema (HAE), through daily prospective observations based on Ecological Momentary Assessment (EMA) via digital surveys and standardised questionnaires. Participants will answer online survey questions about their perceived burden of disease for 8 consecutive weeks. The main hypothesis is that daily prospective observation (EMA) will reveal a higher and more fluctuating burden of disease compared to traditional retrospective scales, providing a more accurate representation of the impact of HAE on patients' daily lives.
Eligibility
Plain Language Summary
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Interventions
A real-time data collection method involving brief, repeated digital surveys completed by participants in their natural environments. Participants will receive two notifications every other day for 8 weeks via a mobile application. Surveys are designed to assess physical symptoms, socio-occupational status, and emotional states related to Hereditary Angioedema (HAE) to capture daily fluctuations in disease burden.
Locations(1)
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NCT07448181