Prospective collection of clinical data on cystic echinococcosis: experience with the European Registry of Cystic Echinococcosis in Pavia, Italy

Abstract

Abstract Background Cystic echinococcosis (CE) is a chronic, complex and neglected infection that may cause serious disease in humans. Given its peculiar epidemiologic and clinical features, collection of clinical data is challenging. Notification systems, when available, fail to record important clinical features, available data are mostly retrospectively collected and no prospectively enrolled uniform surveillance systems exist. The European Register of Cystic Echinococcosis database (ERCE) is the first systematic attempt to address these issues. Methods Here, we describe the demographics and clinical characteristics of 436 patients who accessed the CE clinic at the University of Pavia–San Matteo Hospital Foundation, in Pavia, Italy, from March 2012 to February 2020. Results Overall, 436 patients, consisting of 204 (46.8%) males and 232 (53.2%) females were enrolled; the mean age at enrollment was 50 (range 4–88) y. Of the 436 patients, 248 (56.9%) were born in Italy while 188 (43.1%) were foreign-born. In total, 638 CE cysts were counted, most of them in the CE4 (230; 36.1%) and CE3b (131; 20.5%) stages. Conclusions This is the largest cohort of CE patients with detailed clinical and demographic data published to date. We strongly encourage colleagues caring for CE patients in the European Union to join the ERCE.