Registry for patients with angioedema
Official title: International Registry of Isolated Angioedema
Run by University Hospital, Grenoble · NCT03845946 · Data updated 2026-11-12
This study is gathering information from patients with recurring angioedema to better understand the condition and improve treatment options.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 1000 (estimated) |
| Sponsor | University Hospital, Grenoble Academic / other |
| Locations | 1 site (Grenoble, Isere) |
| Status | Recruiting |
| Started | September 1, 2018 |
| Main results expected | September 1, 2028 |
| Study ends | September 1, 2028 |
| Registry record updated | November 1, 2021 |
| Trial ID | NCT03845946 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include patients with isolated angioedema without associated wheals, including those with hereditary angioedema.
✕Probably not a fit
Patients who experience wheals along with angioedema or those unable to provide consent will not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
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.
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 gone: 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.
Who can join: the full rules
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 it's running
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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
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Oral deucrictibant to prevent and treat hereditary angioedema attacks
This trial tests whether daily oral deucrictibant XR can prevent angioedema attacks and whether deucrictibant capsules can quickly relieve acute attacks in adults with bradykinin-mediated hereditary angioedema.
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Using lanadelumab to prevent acquired angioedema attacks
This study is testing if a new medication called lanadelumab can help people with acquired angioedema have fewer attacks.
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Angioedema biomarker tests to help diagnose recurrent swelling
This study tests multiple blood-based diagnostic tests to see if they can better identify the cause of recurrent angioedema in patients compared with current tests.
-
Creating a database for patients with immune-mediated inflammatory diseases
This study is creating a database and biobank for patients with immune-related diseases to see if new information can help improve treatments and understand their conditions better.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.