Thalassaemia International Federation is currently establishing a global database on the epidemiology of Thalassaemia. This comprises evidence-based data on the distribution of alpha- and beta-thalassaemias at country level, including incidence, prevalence and carrier frequencies of thalassaemias in the population. At present, while there are fragmented studies from different parts of the world, there is no central repository of data on thalassaemia that has been shown to meet WHO standards. This information is needed for TIF to design, implement, and evaluate programmes that meet recognized needs, and to advocate effectively on behalf of its constituency.
TIF Epidemiology Project is a survey for Haemoglobin disorders and their treatment globally. The project aims to identify and update information on carrier rates of Hb disorders, and calculate the affected births suffering from beta-thalassaemia expected to occur every year based on birth rate, population size, carrier rate and absence of prevention policies. Finally, TIF Epidemiology Project aims to review and identify the healthcare infrastructure and services for chronic disease patients and more specifically for Hb disorders (Including reimbursement models used at the moment) in each country. With this project, TIF wishes to enrich our knowledge about epidemiology and management status of Hb disorders at a global level, thus allowing us to tailor and focus our activities appropriately for a greater impact of TIF's work and the best possible aid to Hb patients worldwide.
