CLOUD-R HAE REGISTRY

Condition(s) studied

Investigational drug(s) / intervention(s)

angioedema: electronic tracking book

Study summary

Angioedema is a disease characterized by the appearance of self-limiting edema that last 1-5 days and affect the subcutaneous tissue and/or gastrointestinal and oropharyngeal mucosa. In this last location edema can be lethal causing asphyxia, in all other cases full recovery is complete. Attacks can appear as part of the syndrome urticaria angioedema and can be of allergic origin. But there is a group of non-allergic angioedema that occur without hives and can be either hereditary or acquired. These angioedema are identified in some cases on the basis of etiology, in others are identified by the mediator and an overall classification of these forms of angioedema was published in 2014 as a result of a consent conference organized by the proponents of this registry. Being these forms of angioedema rare, there are not significative case studies inclusive of a high number of patients. This registry aims to collect in a single place a high number of subjects with recurring angioedema and without urticaria.

Eligibility

Primary outcome measure(s)

• Demographic patient data — 5 years
  Sexe and age of patient
• Clinical characteristics — 5 years
  summary of patient visit report
• Comorbidity — 5 years
  additional diseases
• Angioedema diagnosis — 5 years
  type of angiodema
• Angioedema diagnosis — 5 years
  position of genetic mutation if applicable
• Angioedema diagnosis — 5 years
  biology marker : C1inh, C4, C1q, anti C1inh
• Angioedema diagnosis — 5 years
  family history
• Duration and severity of acute angioedema events — 5 years
  start date
• Duration and severity of acute angioedema events — 5 years
  localization
• Duration and severity of acute angioedema events — 5 years
  time before treatment
• Duration and severity of acute angioedema events — 5 years
  time to resolution
• Duration and severity of acute angioedema events — 5 years
  need access to hospital
• Treatments used in managing the acute angioedema event — 5 years
  name
• Treatments used in managing the acute angioedema event — 5 years
  dose
• Treatments used in managing the acute angioedema event — 5 years
  date and time of acute treatment
• Treatments used in the prophylaxis of angioedema — 5 years
  name
• Treatments used in the prophylaxis of angioedema — 5 years
  dose
• Treatments used in the prophylaxis of angioedema — 5 years
  start date

Trial sites (1)

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