HAE Burden and Crisis Management (ECRINS)

Grenoble Alpes University Hospital Center (CHU)

Status: Enrolling

Conditions: Hereditary Angioedema (HAE)

Study type: Observational

Funder types: Other

Identifiers

NCT06806618

3824.0394

Details and patient eligibility

About

The study has been designed as a French, multicentric survey study to obtain data to describe the burden of on-demand treatment for patients with hereditary angioedema (HAE). The online survey assesses various aspects of HAE and in particular the burden of HAE from the patients' and caregivers' perspectives.

Full description

The study has been designed as a French, multicentric survey study to obtain data to describe the burden of on-demand treatment for patients with hereditary angioedema (HAE). The study will also explore the burden related to the administration of intravenous or subcutaneous on-demand treatments. The study was designed to collect data concerning the burden of HAE in patients with HAE (during HAE attacks and between attacks) and in caregivers. The online survey will collect data to describe the characteristics of patients with HAE, the disease characteristics, details concern various aspects of HAE attacks, and the burden of HAE in patients and their caregivers.

Enrollment: 300 estimated patients

Sex: All

Ages: 12+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

For the patient population:

1. Patients with a confirmed diagnosis of HAE with a deficit in the C1 inhibitor.
2. Aged ≥12 years
3. Having consulted for HAE in the last 3 months and with a medical file.

For the caregiver population:

1. A person identified by the patient as part of their support group and who provides support with the management of the patients HAE (including family members, friends, spouse, etc.)

Exclusion criteria

For the patient population:

1. Opposes to participating in the study.
2. Patients is under guardianship or deprived of their liberty.

Trial design

300 participants in 1 patient group

Patients with HAE

Description:

Patients will complete an online survey.