Chronic Angioedema Registry

CARE is a project driven by the GA²LEN network of Angioedema Centers of Reference and Excellence (ACAREs) and the Urticaria Network e.V. (UNEV)

About CARE and who we are.

The chronic angioedema registry (CARE) is a prospective, international, multi-center,observational (non-interventional), open-ended disease registry developed andmanaged by GA²LEN ACARE and UNEV e.V.

Background

Angioedema (AE) is the localized deep dermal, subcutaneous or submucosal edema of tissues resulting from the increase in vascular permeability and extravasation of intravascular fluids. Patients with chronic AE experience recurrent swellings at different locations of the body for longer than 6 weeks. As of now, the epidemiology, duration, disease course, response to treatment and underlying causes of chronic angioedema are still ill defined. While a registry would be an appropriate tool to assess these features, this was, until recently, not available. Therefore, the Chronic Angioedema Registry (CARE) was set up as an academia-driven, open-ended registry for all sub-forms of chronic angioedema, i.e. mast cell – mediated angioedema (AE-MC), bradykinin-mediated angioedema (AE-BK), drug-induced angioedema, hereditary angioedema (HAE) and angioedema of unknown origin. CARE is investigator-initiated and hosted by the non profit organization Urticaria Network e.V. (UNEV) with support by GA²LEN ACARE. The registry is open to all angioedema-treating physicians and centers.

Objectives

The aim of CARE is to improve the knowledge on chronic angioedema, among others regarding its epidemiology (e.g. frequency, duration, course of disease),underlying causes, comorbidities, trigger factors, treatment response, costs and impact of disease as well as to globally improve the understanding of chronic angioedema and its types and sub-types. The results of the registry will be published and should help to improve the medical care for patients with recurrent angioedema.