Heart complications in thalassaemia, mainly due to iron toxicity, are the commonest cause of death in young adults. This finding is the same in all reported data from many centres with the Italian data reported by Borgna-Pigniati C et al (Haematologica 2004) being the most extensive multi-centre study:
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This fact alone makes the expert monitoring and case management of thalassaemia patients by dedicated cardiologists as members of the multi-disciplinary team a necessity which cannot be neglected. Despite this, in a response of 292 thalassaemia major patients and 30 thalassaemia intermedia patients (all of them over the age of 10 years) to a questionnaire prepared by TIF on behalf of the ENERCA (EU Rare Anaemias project), there were 79 (24.5%) who stated that they have never seen a cardiologist. In a similar survey conducted by TIF in Middle East countries in 2009, 86.4% of 90 health professionals stated that they lack multi-disciplinary support. 29.2% of patients (96 in total and all above the age of 10 years) had never seen a cardiologist. It seems therefore that both in Europe and in less developed areas many patients do not even have standard cardiology monitoring or expert care, which is the most crucial of the complications faced by iron loaded patients.
TIF in recognition of this need has collaborated with experts in the field to form an international network to promote recruitment and training of cardiologists for thalassaemia, to educate through workshops and other means and also to promote collaborative research.