Table 1 Schematic overview of the European Register of Cystic Echinococcosis (ERCE) features

Patients enrolled in ERCE

 − with confirmed or probable CE (direct evidence of infection, imaging-based diagnosis alone or associated with positive serology)

 − in- and out-patients

 − all ages and both sexes

 − first visit or follow-up visit

Data recorded for each patient

 − personal data: year of CE first diagnosis and history of treatments

 − clinical data: cyst(s) localization, size and stage, administered treatment(s)

 − data on the biological samples collected (if any)

 − ERCE complies with Italian (Italian Personal Data Protection Code n. 196, 2003) and European (2000/C 364/01, and Directive 95/46/EC) regulations on the protection and use of personal data

 − two informed consent forms must be signed by patients at initial registration to allow:

  * their data to be recorded in the Register

  * their biological samples to be shipped to the Echino-Biobank

ERCE structure

 − single multicenter database located within the secured IT network of the Italian National Institute of Health (Istituto Superiore di Sanità, ISS) in Rome

 − organized in sheets where patient data are recorded

 − each registered patient is automatically given a unique ERCE ID code

 − data are uncoupled and anonymized

ERCE users

 − physicians working in health centers where patients with CE are managed

 − join ERCE network voluntarily

 − are provided with personal credentials to login to the register

 − different roles are envisaged:

  * the “person in charge” in each centre enters patients’ data

  * the “supervisor” in each centre can read only data of his/her centre

  * the Register “coordinator” has access to and can download data from all national centres

Requirements to join ERCE

 − to be a physician working in centers where CE patients (in- and out-patients) are visited

 − to get the approval from the Ethics Committee (EC) of each centre/country involved (although the implementation of the Register is only observational and does not involve clinical experimentation)

Ownership of data

 − data from individual centres belongs to the individual centres themselves

 − the coordinator can only use cumulative data for periodic presentations on the progress of ERCE

 − publication of data requires the consent of the individual centres