This is one of TIF’s new projects undertaken for the year 2013 and its goal is to develop a database for Haemoglobinopathy reference centres across the world, mapping the services they provide to patients. This is an extension to the information compiled by ENERCA-3 project and the deliberation of EUCERD, which are focused in promoting Reference Centres across Europe and develop networking between them.
TIF expands this project globally and through a comprehensive questionnaire, the quality and methods of treatment will be investigated and data are expected to be gathered from WHO Collaborating Centres and Reference Centres across the 60 countries in which TIF members are located.
This survey is currently being dispatching across the world and responses will be monitored until the end of August 2013. This information-database will help identify which centres are or approach the criteria set by EUCERD for Reference Centres be used, for creating a network of collaboration for exchanging experiences and expertise between the reference centres globally.