Parasites & vectors, 13: 236

10 páginas, 3 tablas, 4 figuras
Background: The real burden of human cystic echinococcosis (CE) remains elusive, due to the peculiar characteristics of the disease and the heterogeneous and incomplete data recording of clinical cases. Furthermore, official notification systems do not collect pivotal clinical information, which would allow the comparison of different treatment outcomes, and thus circumvent the difficulty of implementing clinical trials for CE. The Italian Register of CE (RIEC) was launched in 2012 and expanded in 2014 into the European Register of CE (ERCE). The primary aim of the ERCE was to highlight the magnitude of CE underreporting, through the recording of cases that were not captured by official records. We present an overview of data collated in the ERCE and discuss its future, five years after its inception. Methods: The ERCE database was explored on March 31st 2019; data concerning participating centres and registered cases were descriptively analysed. Results: Forty-four centres from 15 countries (7 non-European) were affiliated to the ERCE. Thirty-four centres (77%) registered at least one patient; of these, 18 (53%) recorded at least one visit within the past 18 months. A total of 2097 patients were registered, 19.9% of whom were immigrants. Cyst characteristics were reported for at least one cyst at least in one visit in 1643 (78.3%) patients, and cyst staging was used by 27 centres. In total, 3386 cysts were recorded at first registration; mostly located in the liver (75.5%). Data concerning clinical management could be analysed for 920 “cyst stage-location-management” observations, showing great heterogeneity in the implementation of the stage-specific management approach recommended by the WHO. Conclusions: The ERCE achieved its goal in showing that CE is a relevant but neglected public health problem in Europe and beyond, since a proportion of patients reaching medical attention are not captured by official notification systems. The ERCE may provide a valuable starting platform to complement hospital-derived data, to obtain a better picture of the epidemiology of clinical CE, and to collect clinical data for the issue of evidence-based recommendations. The ERCE will be expanded into the International Register of CE (IRCE) and restructured aiming to overcome its current criticalities and fulfil these aims
RIEC development received funding through the Research Project IZSSA07/10RC to Dr. Giovanna Masala (Sardinian Experimental Zooprophylactic Institute, Sassari, Italy), subcontracted to Enrico Brunetti, University of Pavia, Italy. The amendment of RIEC and development of the ERCE was funded through the European Commission, under the Seventh Framework Programme (FP7, Theme Health.2013.2.3.4-1, grant agreement. no. 602051, Project HERACLES: Human Cystic Echinococcosis ReseArch in Central and Eastern Societies; http://www.herac les-fp7.eu/) to Adriano Casulli, Istituto Superiore di Sanità, Rome, Italy. ERCE activities are currently supported by EULAC Health (http://eulac healt h.eu/) and the Italian Ministry of Health - PERITAS project (molecular ePidemiological studiEs on pathways of tRansmIssion and long lasTing cApacity building to prevent cyStic echinococcosis infection) to Adriano Casulli, Istituto Superiore di Sanità, Rome, Italy.