The Need for Translational Epidemiology in Beta Thalassemia Syndromes: A Thalassemia International Federation Perspective

Abstract

Epidemiology is the practical tool to provide information on which policy makers should base planning of services. Epidemiological data for thalassemia is based on inaccurate and often conflicting measurements. This study attempts to demonstrate with examples the sources of inaccuracy and confusion. The Thalassemia International Foundation (TIF) suggests that congenital disorders, for which increasing complications and premature death are avoidable through appropriate treatment and follow-up, should be given priority based on accurate data and patient registries. Moreover, only accurate information about this issue, especially for developing countries, will move national health resources in the right direction.

Keywords: Epidemiology; Health care; Hemoglobinopathies; Sickle cell disease; Thalassemia.