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International Comparison of Thalassemia Registries: Challenges and Opportunities Publisher



Noori T1 ; Ghazisaeedi M1 ; Aliabad GM2 ; Mehdipour Y3 ; Mehraeen E4 ; Conte R5 ; Safdari R1
Authors
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Authors Affiliations
  1. 1. Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran
  2. 2. Children and Adolescent Health Research Center, Department of Pediatric Hematology-Oncology, Faculty of Medicine, Zahedan University of Medical Sciences, Zahedan, Iran
  3. 3. Department of Health Information Technology, School of Allied Medical Sciences, Zahedan University of Medical Sciences, Zahedan, Iran
  4. 4. Department of Health Information Technology, Khalkhal University of Medical Sciences, Khalkhal, Iran
  5. 5. Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Valenzano (BA), Italy

Source: Acta Informatica Medica Published:2019


Abstract

Background: Patient registries use standardized methods to systematically gather uniform data for specific groups of patients managed in clinical practice to evaluate specified outcomes. Aim: The objective of this study was to identify and describe structures of the identified thalassemia registries in worldwide and summarize their key characteristics. Methods: We reviewed the literature on thalassemia registries. A search of PubMed, Scopus, ProQuest, and Science Direct databases was conducted in September 2018. We also reviewed the existing thalassemia registry websites in different countries. The keywords used to our search were as follows: Thalassemia, Hemoglobinopathy, Registry, Database, and Registration System. Some features such as the name of registry, funding source, objectives of the registry, minimum data set, and methods of data collection were determined. Results: We identified 16 thalassemia registries operating on a multinational, national, or regional level between1984 and 2016. Most of these aimed to improve the diagnosis and management of control programs. Government funding was the most common funding source for registries. Furthermore, the most common method of data submission was Web-based data entry. The data were entered by a member of the clinical team or a nominated data manager. Conclusion: Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, thalassemia patients and their caregivers. However, the results of research suggest the establishment of an international network for coordination and collaboration between thalassemia registries. © 2019 Tayebeh Noori, Marjan Ghazisaeedi, Ghasem Miri Aliabad, Yousef Mehdipour, Rosa Conte, Esmaeil Mehraeen, Reza Safdari.
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