HAE Burden and Crisis Management

Launched by UNIVERSITY HOSPITAL, GRENOBLE · Jan 28, 2025

Keywords

ClinConnect Summary

This clinical trial, titled "HAE Burden and Crisis Management," is studying how hereditary angioedema (HAE) affects patients and their caregivers. HAE is a condition that causes sudden and painful swelling in various parts of the body. The researchers want to gather information about the challenges and burdens that patients face when they need immediate treatment for HAE episodes. To do this, they are conducting an online survey that will help them understand the experiences and feelings of both patients and their caregivers.

To participate in this study, patients must be at least 12 years old and have a confirmed diagnosis of HAE with a specific type of protein deficiency. They should also have seen a doctor for their HAE in the last three months. Caregivers, like family members or friends who help manage the patient's HAE, can also take part. Participants can expect to answer questions about their experiences with HAE and the support they receive. This information will be valuable in improving treatment and management strategies for HAE in the future.

Gender

ALL

Eligibility criteria

• 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.