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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.
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 study will also explore the burden related to the administration of intravenous or subcutaneous on-demand treatments. The study was designed to collect data concerning the burden of HAE in patients with HAE (during HAE attacks and between attacks) and in caregivers. The online survey will collect data to describe the characteristics of patients with HAE, the disease characteristics, details concern various aspects of HAE attacks, and the burden of HAE in patients and their caregivers.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients with HAE | Patients will complete an online survey. |
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| Measure | Description | Time Frame |
|---|---|---|
| To describe the burden associated with the on-demand treatment of HAE attacks | The burden associated with the on-demand treatment of HAE attacks from the patient's and caregiver's perspective, will be described in terms of:
| The survey will focus on HAE attacks that have occurred within the last 12 months. |
| Measure | Description | Time Frame |
|---|---|---|
| Use of on-demand treatments for HAE attacks | The survey will collect data to for the following:
|
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Inclusion Criteria:
For the patient population:
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:
All patients, irrespective of their gender are eligible for the study.
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Patients with HAE
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU Grenoble Alpes | Grenoble | France |
Upon reasonable request.
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| ID | Term |
|---|---|
| D054179 | Angioedemas, Hereditary |
| ID | Term |
|---|---|
| D000799 | Angioedema |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D000081208 | Hereditary Complement Deficiency Diseases |
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| The survey will focus on HAE attacks that have occurred within the last 12 months. |
| D000081207 | Primary Immunodeficiency Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D014581 | Urticaria |
| D017445 | Skin Diseases, Vascular |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D006969 | Hypersensitivity, Immediate |
| D006967 | Hypersensitivity |
| D007154 | Immune System Diseases |
| D007153 | Immunologic Deficiency Syndromes |