HAE patients and caregivers speak out: the hidden costs of On-Demand treatment

NCT ID NCT06806618

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This completed French survey of 300 hereditary angioedema (HAE) patients and their caregivers aimed to understand the challenges of using on-demand treatments for HAE attacks. Researchers collected data on attack frequency, severity, treatment delays, hospitalizations, and the financial and emotional impact on both patients and caregivers. The goal is to identify why some people delay or skip injectable treatments, helping improve future care and support.

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Conditions

The condition(s) this trial relates to.

hereditary angioedema hereditary angioedema with C1Inh deficiency

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • CHU Grenoble Alpes

    Grenoble, France