RecruitingNCT06806618

HAE Burden and Crisis Management

Survey Evaluating the Burden and Management of HAE Crises by Patients and Caregivers


Sponsor

University Hospital, Grenoble

Enrollment

300 participants

Start Date

Mar 1, 2025

Study Type

OBSERVATIONAL

Conditions

Summary

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.


Eligibility

Min Age: 12 Years

Inclusion Criteria6

  • For the patient population:
  • Patients with a confirmed diagnosis of HAE with a deficit in the C1 inhibitor.
  • Aged ≥12 years
  • Having consulted for HAE in the last 3 months and with a medical file.
  • For the caregiver population:
  • \. 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 Criteria3

  • For the patient population:
  • Opposes to participating in the study.
  • Patients is under guardianship or deprived of their liberty.

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Locations(1)

CHU Grenoble Alpes

Grenoble, France

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NCT06806618


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