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* 1 Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran
2 Deputy of Research, Ministry of Health and Medical Education, Tehran. Iran
3 Department of Parasitology, School of Medicine, Shahrekord University of Medical Sciences, Shahrekord, Iran
4 Department of Laboratory Sciences, School of Allied Medicine, Lorestan University of Medical Sciences, Khorramabad, Iran
5 Disease and Health Outcomes Registry Department, Qazvin University of Medical Sciences, Qazvin, Iran
6 Department of Medical Microbiology and Immunology, Faculty of Medicine, Qom University of Medical Sciences, Qom, Iran
7 School of Medicine, Shahroud University of Medical Sciences, Shahroud, Iran
8 Toxoplasmosis Research Center, Communicable Diseases Institute, Iranian National Registry Center for Toxoplasmosis (INRCT), Mazandaran University of Medical Sciences, Sari, Iran
9 Molecular and Cell Biology Research Center, Mazandaran University of Medical Sciences, Sari, Iran
10 Department of Laboratory Sciences, Maragheh University of Medical Sciences, Maragheh, Iran
11 Department of Health Information Technology, Kermanshah University of Medical Sciences, Kermanshah, Kermanshah, Iran
12 Department of Parasitology and Mycology, School of Medicine, Zabol University of Medical Sciences, Zabol, Iran
13 Infectious and Tropical Diseases Research Center, Shahid Sadoughi University of Medical Sciences, Yazd, Iran
14 Foodborne and Waterborne Diseases Research Center, Research institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran
15 Surgical Oncology Research Center, Imam Reza Hospital, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
16 Department of Internal Medicine, Ali-Ibn-Abi-Talib Hospital, Rafsanjan University of Medical Sciences, Rafsanjan, Iran
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.