Registry for patients with angioedema
International Registry of Isolated Angioedema
This study is gathering information from patients with recurring angioedema to better understand the condition and improve treatment options.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1000 (estimated) |
| Sex | All |
| Sponsor | University Hospital, Grenoble Academic / other |
| Locations | 1 site (Grenoble, Isere) |
| Trial ID | NCT03845946 on ClinicalTrials.gov |
What this trial studies
This registry aims to collect data from patients experiencing recurring angioedema, a condition characterized by self-limiting swelling that can affect various tissues. The Grenoble center will coordinate the registry at a national level, ensuring compliance with regulations and facilitating data collection from associated centers. Patients will be monitored through an electronic diary, allowing for reliable tracking of their condition and treatment outcomes. The registry seeks to enhance understanding of angioedema by compiling a significant number of cases for analysis.
Who should consider this trial
Good fit: Ideal candidates include patients with isolated angioedema without associated wheals, including those with hereditary angioedema.
Not a fit: Patients who experience wheals along with angioedema or those unable to provide consent will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could improve the management and treatment of angioedema by providing valuable insights into the condition.
How similar studies have performed: While there may be limited data on similar registries, the approach of compiling patient data for rare conditions has shown promise in enhancing understanding and treatment in other contexts.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Any patient with isolated angioedema without associated wheals. * Patients with hereditary angioedema with or without C1 deficiency. * Major patient with consent (signature) * Minor patient whose parents / legal guardians have given their consent (signature) Exclusion Criteria: * Patient unable to give consent. * Wheals with angioedema
Where this trial is running
Grenoble, Isere
- University Hospital Grenoble — Grenoble, Isere, France (Recruiting)
Study contacts
- Principal investigator: laurence bouillet — University Hospital, Grenoble
- Study coordinator: laurence bouilelt, MD, PhD
- Email: lbouillet@chu-grenoble.fr
- Phone: +33476765565
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.