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A study was jointly conducted by three universities in order to determine whether the systematic prevention of beta-thalassaemia and related affections is justified in the French-speaking part of Belgium. In the entire geographical area considered, 19.1% of the population are foreign; 19.2% of births take place within foreign families. Around 59.7% of foreigners come from regions where beta-thalassaemia is endemic. The ethnic minorities are mostly concentrated in the cities and notably in Brussels. Around 4.1% of the minorities ethnically at risk are carriers of beta-thalassaemia. Births of new cases of thalassaemia major can be estimated at 2.9 per year, which would result, in the absence of prevention, in a population of 130 cases of thalassaemia major. In recent years, patient care has improved considerably, as demonstrated by an increasingly early diagnosis and institution of chelating therapy with an attendant gradual drop in ferritin levels. However, study of age histograms reveals that care of patients in non-endemic regions is not as satisfactory as in endemic countries where complete haemoglobinopathy control programmes have been developed. Psycho-social questioning of a sample of families confirmed that thalassaemia major is an affection which seriously impairs the quality of life. Finally, calculations projected over 20 years revealed that systematic prevention would cost from 2.3 to 2.8 times less than a purely curative approach. The authors conclude that a body of epidemiological, clinical, psycho-social, and economic arguments justify without any doubt the prevention of beta-thalassaemia and related affections in the French-speaking part of Belgium.

Medico-social surveys and pilot experiments, conducted by the authors in Wallonia and Brussels at the request of the Ministry for the French-Speaking Community, have allowed the definition of a community-scale prevention programme. High-quality information, repeated at regular intervals and adapted to the different environments, is vital for effective voluntary screening. The contents of this information and distribution methods have been specified. Screening will take place on an occasional basis among people at risk who request it, or who accept it as an addition to other planned blood tests (curative or preventive consultations); microcytosis must be considered as a definite indication for further work up. Systematic screening is recommended in the framework of upper secondary education, through cooperation between volunteer teachers and the staff of school medical institutions; teaching methods and means have been reviewed.