Iranian Hydatid Disease Registry : Establishment and Implementation of a Neglected Tropical Disease Registry
© 2023 The Author(s). This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited..
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.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2023 |
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| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:26 |
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| Enthalten in: |
Archives of Iranian medicine - 26(2023), 7 vom: 01. Juli, Seite 358-364 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Nasibi, Saeid [VerfasserIn] |
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| Links: |
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| Themen: |
Biobanking |
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| Anmerkungen: |
Date Completed 05.02.2024 Date Revised 14.02.2024 published: Electronic Citation Status MEDLINE |
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| doi: |
10.34172/aim.2023.54 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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NLM367904624 |
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| 520 | |a © 2023 The Author(s). This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
| 520 | |a CONCLUSION: High-quality data in the HydatidReg registry provided opportunities for health professionals to improve quality of care and organize meaningful research | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Biobanking | |
| 650 | 4 | |a Disease surveillance | |
| 650 | 4 | |a Echinococcosis | |
| 650 | 4 | |a Hydatid cyst | |
| 650 | 4 | |a National registry | |
| 700 | 1 | |a Mojarrab, Shahnaz |e verfasserin |4 aut | |
| 700 | 1 | |a Lashkarizadeh, Mohammad Reza |e verfasserin |4 aut | |
| 700 | 1 | |a Shafiei, Mohammad |e verfasserin |4 aut | |
| 700 | 1 | |a Saedi Dezaki, Ebrahim |e verfasserin |4 aut | |
| 700 | 1 | |a Mahmoudvand, Hossein |e verfasserin |4 aut | |
| 700 | 1 | |a Alizadeh, Ardeshir |e verfasserin |4 aut | |
| 700 | 1 | |a Mohammadzadeh, Alireza |e verfasserin |4 aut | |
| 700 | 1 | |a Adnani Sadati, Seyed Jafar |e verfasserin |4 aut | |
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| 700 | 1 | |a Mohtasham, Fatemeh |e verfasserin |4 aut | |
| 700 | 1 | |a Ravari, Mehrnaz Sadat |e verfasserin |4 aut | |
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| 700 | 1 | |a Mosavi Anari, Seyed Alireza |e verfasserin |4 aut | |
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| 700 | 1 | |a Abbasifard, Mitra |e verfasserin |4 aut | |
| 700 | 1 | |a Fasihi Harandi, Majid |e verfasserin |4 aut | |
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