Chronic Angioedema Registry
The chronic angioedema registry (CARE) is a prospective, international, multi-center, observational (non-interventional), open-ended disease registry developed and managed by GA²LEN ACARE and UNEV e.V.
What for?
The aim
The aim of this project is to establish and run a global registry for all patients with angioedema, i.e. patients with mast cell-mediated angioedema (AE-MC), bradykinin-mediated angioedema (AE-BK) and other types of angioedema (AE). The registry will collect real life data with the objective 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 reason why
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.
An overview
Core variables of CARE
Demographic characteristics
Duration and course of the disease
Frequency of angioedema
Treatment response
Quality of life impairment
Underlying causes
Comorbidites
Triggering factors
Disease activity and control
Direct health care costs
About Us
Behind the registry
CARE is the ACARE registry. All ACAREs are expected to contribute to CARE. Participation in CARE does not require ACARE membership. The ACARE network and steering committee support CARE. CARE results are disseminated by ACARE activities and meetings.
UNEV developed and maintains the CARE database. UNEV has the right and the obligation to use the information in the database in relation to the authorities. Participation of investigators and sites in CARE requires completion of a collaboration agreement with UNEV (available from the CARE office and this website).