Abstract
Our previous results reported that compared to sickle cell patients who were not screened at birth, those who benefited from it had a lower incidence of a first bacteremia and a reduced number and days of hospitalizations. In this context, this article reviews the Belgian experience on neonatal screening for sickle cell disease (SCD). It gives an update on the two regional neonatal screening programs for SCD in Belgium and their impact on initiatives to improve clinical care for sickle cell patients. Neonatal screening in Brussels and Liège Regions began in 1994 and 2002, respectively. Compiled results for the 2009 to 2017 period demonstrated a birth prevalence of sickle cell disorder above 1:2000. In parallel, to improve clinical care, (1) a committee of health care providers dedicated to non-malignant hematological diseases has been created within the Belgian Haematology Society; (2) a clinical registry was implemented in 2008 and has been updated in 2018; (3) a plan of action has been proposed to the Belgian national health authority. To date, neonatal screening is not integrated into the respective Belgian regional neonatal screening programs, the ongoing initiatives in Brussels and Liège Regions are not any further funded and better management of the disease through the implementation of specific actions is not yet perceived as a public health priority in Belgium.
Highlights
At the World Health Organization, sickle cell disease has been recognized as a global public health problem [1]
In Belgium, there are no national recommendations for sickle cell disease screening at birth and only local initiatives offer the benefit of early diagnosis to a small number of families
Neonatal screening for sickle cell disease (SCD) began in five Brussels maternity wards in December 1994, but has been offered to all neonates in all maternity wards of the Brussels Region since 2004 (2004–2017: 310,053 neonates screened); screening began in one maternity ward in Liège Region in 2002 and was extended to 15 maternity wards in Liège Region in 2009 (East of Belgium; 2008–2017: 186,829 neonates screened)
Summary
At the World Health Organization, sickle cell disease has been recognized as a global public health problem [1]. The benefit of neonatal screening for SCD has been established for many years [4]. Birth prevalence of this disease is not the only criterion for choosing to include sickle cell disease in the neonatal screening program, but in countries where birth prevalence of the condition is greater than 1:6000, this has been shown to be cost-effective [5]. In several European countries such as Belgium, neonatal screening for SCD is not part of the national neonatal screening program. In Belgium, there are no national recommendations for sickle cell disease screening at birth and only local initiatives offer the benefit of early diagnosis to a small number of families. Following a successful Belgian screening in 2013 for two-thirds of neonates performed as part of a pilot study, it has been shown that the birth prevalence of SCD was 1:2329 [6]
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