Abstract
BackgroundThe 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.MethodsThe ERCE database was explored on March 31st 2019; data concerning participating centres and registered cases were descriptively analysed.ResultsForty-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.ConclusionsThe 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.
Highlights
The real burden of human cystic echinococcosis (CE) remains elusive, due to the peculiar characteris‐ tics of the disease and the heterogeneous and incomplete data recording of clinical cases
The absence of data from those centres that never entered patients’ information in the database (Fig. 2) is most likely due to a variable combination of reasons. These include absence of new diagnoses of CE or follow-up visits of patients managed in the centre, duties overload or change of position of the clinician who originally joined voluntarily the network
A total of 119 patients (5.7% of all patients registered in European Register of CE (ERCE)) were detected during the ultrasound-based population screening carried out in 2014–2015 in Bulgaria, Romania and Turkey, in the context of the HERACLES project [20]
Summary
The real burden of human cystic echinococcosis (CE) remains elusive, due to the peculiar characteris‐ tics of the disease and the heterogeneous and incomplete data recording of clinical cases. Current CE burden estimates indicate globally about 300,000 disability adjusted life years, and an annual cost of about 200 million USD for human treatment of CE [4]. These estimates, based on highly heterogeneous and incomplete data sources, are largely underestimated, resulting in misperception of the magnitude of CE public health impact. In official European records, species differentiation between E. granulosus (s.l.) and Echinococcus multilocularis, the agent of alveolar echinococcosis (AE), is limited, adding to the inaccuracy of data [9, 10]
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