Abstract
Cystic echinococcosis (CE), a worldwide zoonosis, is highly endemic in southern and eastern Europe. Its actual prevalence is unknown due to the lack of efficient reporting systems designed to take into account the particular features of the disease. Neglect of CE makes diagnosis and clinical management difficult outside referral centres, with inconsistencies in clinical practice and often unnecessary procedures carried out that have associated risks and costs. The Italian registry of CE (RIEC) is a prospective multicentre registry of CE patients seen from January 2012 in Italian health centres; data are voluntarily submitted to the registry. Its aims are to show the prevalence of CE in Italy, bring the importance of this infection to the attention of health authorities, encourage public health policies towards its control, and stimulate biological, epidemiological and clinical research on CE. From January 2012 to February 2014, a total 346 patients were enrolled in 11 centres, outnumbering national reports of many CE-endemic European countries. We discuss preliminary data and challenges of the RIEC, template for the European registry of CE, which has been implemented within the Seventh Framework Programme project HERACLES (Human cystic Echinococcosis ReseArch in CentraL and Eastern Societies) since September 2014.
Highlights
Cystic echinococcosis (CE) is a zoonotic disease affecting an estimated 1.2 million people worldwide, with 3 million disability-adjusted life years (DALYs) lost globally every year, these figures are likely to be underestimates [1]
Aspects such as cyst stage and therapy outcome, which have a profound impact on the clinical management of patients and in turn on public health resource allocation, are generally not collected in notification forms
By February 2014, 16 centres had adhered to the RIEC, with 346 patients enrolled in 11 centres
Summary
Cystic echinococcosis (CE) is a zoonotic disease affecting an estimated 1.2 million people worldwide, with 3 million disability-adjusted life years (DALYs) lost globally every year, these figures are likely to be underestimates [1]. Given the chronicity and frequent relapses in CE [24,25], patients often access different health centres over time, which could lead to potential duplication of data, which would contribute to inaccurate statistics Aspects such as cyst stage and therapy outcome, which have a profound impact on the clinical management of patients and in turn on public health resource allocation, are generally not collected in notification forms. To start tackling these long-standing problems, the WHO Collaborating Centre for the Clinical Management of Cystic Echinococcosis, (University of Pavia, San Matteo Hospital Foundation, in Pavia) and the Istituto Superiore di Sanità (the Italian National Health Institute, ISS, in Rome) set up the Italian registry of cystic echinococcosis (Registro Italiano Echinococcosi Cistica, RIEC). These are entered using drop-down menus and multiple-choice options to facilitate data extraction and analysis, and can be updated following duplication and amendment
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