Survey on the burden of hereditary angioedema treatment
Survey Evaluating the Burden and Management of HAE Crises by Patients and Caregivers
This study is trying to understand how the treatment for hereditary angioedema affects patients and their caregivers by gathering their experiences and challenges through an online survey.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 300 (estimated) |
| Ages | 12 Years and up |
| Sex | All |
| Sponsor | University Hospital, Grenoble Academic / other |
| Locations | 1 site (Grenoble) |
| Trial ID | NCT06806618 on ClinicalTrials.gov |
What this trial studies
This observational study is designed as a multicentric survey in France to gather data on the burden of on-demand treatment for patients with hereditary angioedema (HAE). It aims to assess various aspects of HAE from the perspectives of both patients and their caregivers, focusing on the impact of the disease during and between attacks. The online survey will collect detailed information about patient characteristics, disease specifics, and the overall burden experienced by patients and their support systems.
Who should consider this trial
Good fit: Ideal candidates include patients aged 12 and older with a confirmed diagnosis of hereditary angioedema and a recent consultation for their condition.
Not a fit: Patients who oppose participation or are under guardianship will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could provide valuable insights that may lead to improved management strategies for patients with hereditary angioedema.
How similar studies have performed: While this approach is observational and focuses on patient-reported outcomes, similar studies have successfully highlighted the burdens of chronic conditions, suggesting potential for meaningful insights.
Eligibility criteria
Show full inclusion / exclusion 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.
Where this trial is running
Grenoble
- CHU Grenoble Alpes — Grenoble, France (Recruiting)
Study contacts
- Study coordinator: Laurence Bouillet, Professor
- Email: LBouillet@chu-grenoble.fr
- Phone: +33 (0)476767640
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.