Neonatal Screening for Sickle Cell Disease in Belgium for More than 20 Years: An Experience for Comprehensive Care Improvement

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.

Systematic Literature Review Shows Gaps in Data on Global Prevalence and Birth Prevalence of Sickle Cell Disease and Sickle Cell Trait: Call for Action to Scale Up and Harmonize Data Collection

“…. Global and regional birth prevalence a of SCD in Africa [23,[50][51][52][53][54][55][56][57][58][59], Europe [60][61][62][63][64][65][66][67][68][69][70], India [71], the Middle East [39,[72][73][74][75], North America [76][77][78][79], and South America/the Caribbean [80][81][82][83][84][85][86][87][88][89][90][91]. a Within each region, the birth prevalence was estimated using a binomial normal model, which assumed a binomial distribution for the individual studies with a mean value drawn from a normal distribution for a regional/global value.…”

“…a Within each region, the birth prevalence was estimated using a binomial normal model, which assumed a binomial distribution for the individual studies with a Figure5. Global and regional birth prevalence a of sickle cell trait in Africa[23,[50][51][52][53][54][57][58][59], Europe[61,63,[65][66][67][68][69][70]92], India[71], the Middle East[72][73][74][75], North America[76,79,93,94], and South America/the Caribbean[80][81][82][83][85][86][87][88][89][90][91]. a Within each region, the birth prevalence was estimated using a binomial normal model, which assumed a binomial distribution for the individual studies with a mean value drawn from a normal distribution for a regional/global value.…”

Current Status of Newborn Bloodspot Screening Worldwide 2024: A Comprehensive Review of Recent Activities (2020–2023)

“…A recent publication provides real-world cost-effectiveness information on SMA NBS in Belgium [ 724 ]. The experiences of 20 years of limited screening for SCD and the potential impact of adding it to the NBS panel were reported with the hope of adding HGB to the screening panels [ 725 ]. A 2020 study in Flanders evaluated the cost effectiveness of four NBS strategies for CF [IRT-DNA (immunoreactive trypsinogen, cystic fibrosis transmembrane conductance regulator ( CFTR ) gene mutation analysis), IRT-PAP (pancreatitis-associated protein), IRT-PAP-DNA, and IRT-PAP-DNA-EGA (extended CFTR gene analysis)], assessing whether each met the guidelines of the European Cystic Fibrosis Society [ 726 ].…”

Dépistage néonatal de la drépanocytose au cours de la pandémie au COVID-19 à Kisangani, en République Démocratique du Congo

“…La drépanocytose constitue un problème crucial de Santé Publique dans le monde [ 1 ]. Par sa chronicité et la sévérité des crises qu´elle engendre, son suivi médical et social s´avère nécessaire [ 2 ].…”

“…Par sa chronicité et la sévérité des crises qu´elle engendre, son suivi médical et social s´avère nécessaire [ 2 ]. Elle représente un lourd fardeau pour l´Afrique subsaharienne [ 1 ] où naissent chaque année 75% des nouveau-nés qui en sont atteints [ 3 ]. La République Démocratique du Congo (RDC) en est largement touchée avec une prévalence qui la classe 2 e pays en Afrique après le Nigéria et 3 e au monde après l´Inde et le Nigeria [ 4 ].…”