Key facts about the registry
Publications of the past years have demonstrated that many patients with chronic angioedema experience a major impairment of their health-related quality of life (HRQoL). In addition, a considerable proportion of patients experience chronic AE for years or life-long, i.e. in HAE.
Despite the high frequency of chronic angioedema and the availability of some retrospectively assessed data on the course of the disease, the epidemiology, comorbidities, duration of disease, course of disease, underlying causes, treatment responses and medical expenses are still insufficiently investigated. A registry is an appropriate tool to assess these features in the real-life setting.
Collaborative
Framework
- Investigator-initiated registry coordinated by non for profit organization Urticaria Network e.V. (UNEV) and GA²LEN e.V.
- Academia-driven – ACAREs and other physicians / sites who treat patients with recurrent angioedema
- Endorsed by national and international scientific and medical societies
- Cooperation with stakeholders (industry, patient organizations, payers, health authorities)
- Open to all angioedema-treating physicians / centers
- Open to all chronic angioedema patients
Key features of CURE
Web-based-registry
Access and manage your important records effortlessly with our user-friendly web-based registry.
Effortless Data Entry for Physicians
Patient module (entered once in 30 minutes) and Physician module (entered once in 5 minutes).
Simple Follow-up Data Entry for Physicians
Patient module (entered every 3-6 months in 15 minutes).
Inclusive Participation
Registry population
CARE is open to all angioedema-treating physicians/sites and all chronic angioedema patients. It is the intention of CARE to obtain data from as many chronic angioedema patients as possible. There is no predefined sample size as this is an observational registry. There is also no limit with regard to the age or gender of patients. No selection of patients is intended since it is the aim to collect unbiased data from the real life clinical setting.
Advancements in the Exploration
Data Analyses, Interpretation and Publications
CARE aims to improve the knowledge on recurrent angioedema, by CARE data analyses, interpretation, reporting and publication. Reports containing descriptive information as well as the results of analyses of CARE patient data will be provided for information to CARE ISC members, CARE investigators and eligible partners at regular intervals. In addition to these regular descriptive data summaries, specific analyses of scientific or clinical interest are conducted.
Patient inclusion
Current status
- 1st year milestone 30%