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. 2023 Jul 1;26(7):358-364.
doi: 10.34172/aim.2023.54.

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

Saeid Nasibi  1 , Shahnaz Mojarrab  2 , Mohammad Reza Lashkarizadeh  1 , Mohammad Shafiei  1 , Ebrahim Saedi Dezaki  3 , Hossein Mahmoudvand  4 , Ardeshir Alizadeh  5 , Alireza Mohammadzadeh  5 , Seyed Jafar Adnani Sadati  6 , Seyed Reza Mirbadie  7 , Masoud Keighobadi  8 , Shirzad Gholami  9 , Saber Raeghi  10 , Masoumeh Abbasi  11 , Fatemeh Mohtasham  1 , Mehrnaz Sadat Ravari  1 , Mansour Dabirzadeh  12 , Seyed Alireza Mosavi Anari  13 , Hamed Mirjalali  14 , Mohsen Aliakbarian  15 , Mitra Abbasifard  16 , Majid Fasihi Harandi  1
Affiliations

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

Saeid Nasibi et al. Arch Iran Med. .

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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Conflict of interest statement

Competing Interests

The authors declare no conflict of interests.

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