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International Comparison of Thalassemia Registries: Challenges and Opportunities

Tayebeh Noori, Marjan Ghazisaeedi, Ghasem Miri Aliabad, Yousef Mehdipour, Rosa Conte, Esmaeil Mehraeen, Reza Safdari.


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.

Key words: Thalassemia, Hemoglobinopathy, Surveillance, Registry, Database

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