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

Grenoble Alpes University Hospital Center (CHU)

Status: Completed

Conditions: Hereditary Angioedema

Treatments: Other: questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT04888650

38RC21.054

Details and patient eligibility

About

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)

Enrollment: 314 patients

Sex: All

Volunteers: No Healthy Volunteers

Inclusion criteria

• Patient with HAE with or without C1 inhibitor deficiency
• Patient over 15 or parents of a child under 15 with HAE

Exclusion criteria

• Patient opposed to the use of their data or refusing to answer the questionnaire
• Adult patients protected by law

Trial design

314 participants in 1 patient group

angiodema hereditary patients

Description:

Patient with HAE with or without C1 inhibitor deficiency will respond to an electronic questionnaire

Treatment:

Other: questionnaire