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Neonatal Screening for Sickle Cell Disease in Belgium for More than 20 Years: An Experience for Comprehensive Care
Béatrice Gulbis1, Phu-Quoc Lê2, Olivier Ketelslegers3
1Department of Clinical Chemistry, LHUB-ULB, Université Libre de Bruxelles (ULB) 322, Rue Haute, 1000 Brussels, Belgium.
Insights
Neonatal screening for sickle cell disease (SCD) in Belgium reduces bacteremia and hospitalizations. However, screening is not yet integrated into national programs, hindering comprehensive care and public health prioritization.
Area of Science:
- Hematology
- Public Health
- Pediatrics
Background:
- Neonatal screening for sickle cell disease (SCD) has shown benefits in reducing complications like bacteremia and hospitalizations.
- Belgium has regional neonatal screening programs for SCD in Brussels and Liège, established in 1994 and 2002, respectively.
Purpose of the Study:
- To review the Belgian experience with neonatal screening for sickle cell disease.
- To update on the status and impact of regional SCD screening programs in Belgium.
- To assess initiatives aimed at improving clinical care for sickle cell patients.
Main Methods:
- Review of compiled results from Belgian regional SCD screening programs (2009-2017).
- Analysis of initiatives implemented to improve clinical care for SCD patients.
- Assessment of the integration and funding of neonatal screening programs.
Main Results:
- The birth prevalence of sickle cell disorder in Belgium was found to be over 1:2000 during the 2009-2017 period.
- Initiatives to improve care include a dedicated committee, a clinical registry, and a proposed action plan.
- Neonatal screening is not integrated into national programs, and ongoing initiatives lack further funding.
Conclusions:
- Despite demonstrated benefits, neonatal screening for SCD is not a public health priority in Belgium.
- Lack of integration and funding for screening programs impedes comprehensive management of sickle cell disease.
- Further action is needed to prioritize and support SCD screening and management in Belgium.
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.
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