NCT04888650

Assessment of the State of Health, Quality of Life and Expectations of Patients With Hereditary Angioedema

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 314 (actual)
• Sponsor: University Hospital, Grenoble · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

Summary

8 years after the establishment of the therapeutic education program and 14 years after the creation of the National Reference Center for Angioedemas (CREAK), it is necessary to make an inventory in 2021 on the disease experienced by the patient with an assessment the needs and expectations of HAE patients. This assessment would make it possible to see the evolution of these needs and to adjust the price for the overall cost of children and adults in France. It may also allow a comparison of the requests expressed during a similar survey in another French-speaking region such as Quebec. Main objective is to know the needs and the current satisfaction of the needs, with regard to the disease and the treatment of the targeted patients of hereditary angioedema (HAE)

Conditions

• Hereditary Angioedema

Interventions

Type	Name	Description
OTHER	questionnaire	electronic questionnaire

Timeline

• Start date: 2021-05-03
• Primary completion: 2022-01-02
• Completion: 2022-01-02
• First posted: 2021-05-17
• Last updated: 2023-05-10

Locations

1 site across 1 country: France