International Register of Cystic Echinococcosis (IRCE)

***  ERCE REGISTER IS CURRENTLY UNDER RECONSTRUCTION AS IRCE  ***

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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 IRCE:
IRCE was originally conceived as a tool (ERCE) 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

About us:
IRCE founding coordinator: Adriano Casulli, WHO Collaborating Centre for the Epidemiology, Detection and Control of Cystic and Alveolar Echinococcosis; European Union Reference Laboratory for Parasites; Department of Infectious Diseases. Istituto Superiore di Sanità, Rome, Italy
IRCE deputy coordinator: To be identified
IRCE database and web application: Paolo Vatta, Department of Infectious Diseases. Istituto Superiore di Sanità, Rome, Italy

Contact us:
Adriano Casulli adriano.casulli@iss.it
Paolo Vatta paolo.vatta@iss.it
Istituto Superiore di Sanità
Viale Regina Elena 299
00161 - Rome

PUBLICATIONS

• Rossi P, Tamarozzi F, Galati F, Akhan O, Cretu CM, Vutova K, Siles-Lucas M, Brunetti E, Casulli A; ERCE network. The European Register of Cystic Echinococcosis, ERCE: state-of-the-art five years after its launch. Parasit Vectors. 2020 May 7;13(1):236
• Rossi P, Tamarozzi F, Galati F, Pozio E, Akhan O, Cretu CM, Vutova K, Siles-Lucas M, Brunetti E, Casulli A; HERACLES extended network. The first meeting of the European Register of Cystic Echinococcosis (ERCE). Parasit & Vectors. 2016 Apr 28;9:243
• Tamarozzi F, Rossi P, Galati F, Mariconti M, Nicoletti GJ, Rinaldi F, Casulli A, Pozio E, Brunetti E. The Italian registry of cystic echinococcosis (RIEC): the first prospective registry with a European future. Euro Surveillance 2015 May 7;20(18):21115
• Meeting of the WHO Informal Working Group on Echinococcosis (WHO-IWGE). WHO Headquarters, Geneva, Switzerland 15–16 December 2016