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Table 1 Schematic overview of the structure and features of the ERCE

From: The European Register of Cystic Echinococcosis, ERCE: state-of-the-art five years after its launch

ItemFeature
Patients enrolled in ERCEWith confirmed or probable CE (according to WHO-IWGE 2010 Expert Consensus definition)
In- and out-patients
All ages and both sexes
Diagnosed at the time of the recorded visit or previously; follow-up visits
Data recorded for each patientPersonal data: year of first diagnosis of CE
Clinical data: cyst(s) localization, size and stage
History of treatments and treatment/management approach currently being received
Biological samples collected (if any)
ERCE structureMulticentre database located within the secured IT network of the Italian National Institute of Health (Istituto Superiore di Sanità, ISS) in Rome
Currently available in English, Italian, Romanian, Bulgarian and Turkish
Organized in sheets where patient data are recorded
Each registered patient is automatically given a unique ERCE ID code
Data are uncoupled and pseudonymized
Only the physician who entered the patient’s data and the ERCE manager can access the record
ERCE usersPhysicians working in health centres where patients with CE are managed
Join the ERCE network voluntarily
Are provided with personal credentials to login into 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
Possibility to have a National Centre coordinating data collection from centres of the Countrya
Requirements to join ERCETo be a physician working in centres where CE patients (in- and out-patients) are visited
To obtain the approval from the ethics committee of each centre/country involved (although the implementation of the Register is only observational and does not involve clinical experimentation)
Ownership of dataData from individual centres belong to the individual centres themselves
The coordinator can only use cumulative data for periodic presentations on the progress of the ERCE
Publication of data requires the consent of the individual centres
Confidentiality and securityERCE was approved by the ISS ethics committee (Prot. PRE-C-915/14 of November 25th, 2014), extending the agreement to the Italian Register of CE (Ns Prot. CE/12/347 of May 7th, 2012)
ERCE complies with EU Regulation on the protection and use of personal data (Reg. EU 2016/679)
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
The ISS datacentre, through the Azure Backup Server System, makes a complete backup every night and an online backup copy on cloud daily, weekly, monthly and yearly, stored for up to 20 years
  1. aFrance and Iran