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Real-life Ecological Momentary Assessment of Lived Burden in Hereditary AngioEdema
Sponsor: Istituti Clinici Scientifici Maugeri SpA
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.
Key Details
Gender
All
Age Range
18 Years - Any
Study Type
OBSERVATIONAL
Enrollment
30
Start Date
2026-02-23
Completion Date
2027-02-28
Last Updated
2026-03-04
Healthy Volunteers
No
Conditions
Interventions
ecological momentary assessment
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)
Istituti Clinici Scientifici Maugeri, Milan, Milan 20138
Milan, Italy