Epidemiology Data Bank on Haemoglobin Disorders

The epidemiology project of TIF focuses on the collection of information on carrier rates, anticipated births and current status of haemoglobinopathy control strategies within health systems in the different country members of TIF, for β- and α-thalassaemiaσ, HbE and Sickle Cell Disease (SCD), and combinations constitute the main focus of this work. Correlations of GDP, per capita health expenditure and disease have been made, and the important steps that need to be taken globally to promote non-communicable diseases, including haemoglobin disorders, were highlighted.

The second phase of the project, which began at the end of 2011 and is anticipated to continue through 2013, will focus on the completion of information on β-thalassaemia and will continue to focus on compiling of information on SCD and HbH, to establish an updated epidemiological databank on the most clinically significant haemoglobin disorders; particularly since on new information is being channelled to the patients/parents communities from the expert medical/scientific/research communities, involved in this field. This information is required not only in order to better tailor and support TIF activities, but also to provide information to key United Nations agencies, including WHO, in an effort to prioritise haemoglobin disorders on national, regional and international health agendas, emphasising the contribution of these diseases.

In addition, all electronic and hard-copy files from TIF Members, collaborating countries and organisations have been upgraded to include the following:

• Epidemiological data
• Health systems review
• Outcomes/commitments/joint plans
• Publication search (covering 2007-12)