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

NCT ID NCT06806618

Knowledge-focused Sponsor: University Hospital, Grenoble Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

300 people

The number who actually took part.

Started

Mar 2025

Finished

Aug 2025

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with HAE

Ages

12 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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.

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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.

Hereditary angioedema (HAE)

Contacts and locations

Locations

  • CHU Grenoble Alpes

    Grenoble, France

More trials for these conditions

Other studies related to the condition(s) this trial covers.