The Gianni Benzi Foundation has contributed to a new paper on the challenges and opportunities of thalassemia registries, published on the Acta Inform Med magazine in March 2019.
The paper focuses on patient registries as a method of improving quality and cost efficiency in health and healthcare.
In particular, the authors of this study have identified 16 thalassemia registries operating on multinational, national or regional level between 1984 and 2016 and described their main characteristics, including objectives, data sources, responsible institutions, core data set and the process of registration in different countries.
The analysis confirms the utility of thalassemia registries for the collection of large set of data. Registries provide a positive return on investiment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, thalassemia patients and their caregivers. Also, the research suggests the establishment of an international network for coordination and collaboration between thalassemia registries.