Map of participating centres and countries: More than 2.500 patients from 44 centres in 15 countries involved in the upcoming "International Register of Cystic Echinococcosis" (IRCE).

What is IRCE: IRCE is a prospective, observational, multicentre, online clinical register of patients with probable or confirmed cystic echinococcosis (CE) caused by Echinococcus granulosus sensu lato. IRCE is a database organized in sheets. For each patient, data on the clinical history of the disease (first diagnosis, cyst number and localization, WHO-IWGE cyst classification, symptoms, surgical interventions, other therapies, etc.) are recorded.

History of the IRCE: IRCE was originally conceived as a tool (ERCE, European Register of CE) to capture the number and clinical characteristics of patients with CE reaching medical attention but not official statistics, with the aim to indicate that the burden of CE in Europe is higher than what is shown in official records. In 2016, the WHO Informal Working Group on Echinococcosis individuated in ERCE a possible starting platform for the collection of clinical data to be used to drive evidence on treatment recommendations from case series of patients in the absence of prospective randomized clinical trials, which are extremely difficult to conduct in CE and as such virtually absent. With this commitment, a new amended version from ERCE to IRCE is currently underway to make it fit for this ambitious task.

Aims of IRCE:

• collecting clinical data in a systematic way
• bringing the importance of this neglected infection to the attention of health authorities
• encouraging the planning and implementation of public health policies toward its control
• fostering biological, epidemiological and clinical research on CE