Iranian Hydatid Disease Registry: Establishment and Implementation of a Neglected Tropical Disease Registry

Nasibi, Saeid and Mojarrab, Shahnaz and Lashkarizadeh, Mohammad Reza and Shafiei, Mohammad and Mahmoudvand, Hossein and Alizadeh, Ardeshir and Mohammadzadeh, Alireza and Adnani Sadati, Seyed Jafar and Mirbadie, Seyed Reza and Keighobadi, Masoud and Gholami, Shirzad and Raeghi, Saber and Abbasi, Masoumeh and Mohtasham, Fatemeh and Ravari, Mehrnaz Sadat and Dabirzadeh, Mansour and Mosavi Anari, Seyed Alireza and Mirjalali, Hamed and Aliakbarian, Mohsen and Abbasifard, Mitra and Fasihi Harandi, Majid (2023) Iranian Hydatid Disease Registry: Establishment and Implementation of a Neglected Tropical Disease Registry. Archives of Iranian medicine.

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Abstract

Background: Cystic echinococcosis (CE) or hydatid disease is a global public health concern which imposes considerable economic costs on the communities in endemic regions. CE surveillance data are not adequately reliable. The present study reports the development and outcomes of a CE registry in Iran. Methods: Hydatid Registry (HydatidReg) was initially established as a single-center registry in 2014 after the ethical approval of KMU. Following a call from MoHME to promote registry of different diseases and health outcomes, a call for participation was announced and all the Iranian Universities of Medical Sciences were requested to contribute to the registry. Subsequently, a nation-wide registry of hydatid disease was established in 2016. With a global perspective, HydatidReg joined the European Register of Cystic Echinococcosis (ERCE). A data collection form based on minimum dataset was designed and standard operating procedures (SOPs) were prepared to ensure standardized patient enrolment in the registry. A biobank system with two-dimensional barcoding was established along with HydatidReg for management and organization of biological specimens. Results: As of March 2021, a total of 690 patients were enrolled in the registry. HydatidReg registered 362 (17.3%) out of the total 2097 patients enrolled in ERCE. Quality control (QC) of the data demonstrated 91.2% completeness and 80% timeliness. In the biobank, 322 biological specimens from 184 CE patients have been deposited including 70 blood, 96 sera and 156 parasite materials. Conclusion: High-quality data in the HydatidReg registry provided opportunities for health professionals to improve quality of care and organize meaningful research. Keywords: Biobanking; Disease surveillance; Echinococcosis; Hydatid cyst; National registry.

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