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比利时20多年来的镰状细胞病新生儿筛查:改善综合护理的经验

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

作者信息

Gulbis Béatrice, Lê Phu-Quoc, Ketelslegers Olivier, Dresse Marie-Françoise, Adam Anne-Sophie, Cotton Frédéric, Boemer François, Bours Vincent, Minon Jean-Marc, Ferster Alina

机构信息

Department of Clinical Chemistry, LHUB-ULB, Université Libre de Bruxelles (ULB) 322, Rue Haute, 1000 Brussels, Belgium.

Department of Hemato-Oncology Hôpital Universitaire des Enfants Reine Fabiola, Université Libre de Bruxelles (ULB) 15, av. J.J. Crocq, 1020 Brussels, Belgium.

出版信息

Int J Neonatal Screen. 2018 Nov 27;4(4):37. doi: 10.3390/ijns4040037. eCollection 2018 Dec.

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.

摘要

我们之前的研究结果表明,与出生时未接受筛查的镰状细胞病患者相比,受益于筛查的患者首次发生菌血症的发生率较低,住院次数和天数也有所减少。在此背景下,本文回顾了比利时在镰状细胞病(SCD)新生儿筛查方面的经验。文章介绍了比利时两个地区性SCD新生儿筛查项目的最新情况,以及它们对改善镰状细胞病患者临床护理举措的影响。布鲁塞尔地区和列日地区的新生儿筛查分别始于1994年和2002年。2009年至2017年期间汇总的结果显示,镰状细胞病的出生患病率高于1:2000。与此同时,为改善临床护理,(1)比利时血液学协会内部成立了一个致力于非恶性血液疾病的医疗服务提供者委员会;(2)2008年实施了一项临床登记,并于2018年进行了更新;(3)已向比利时国家卫生当局提出了一项行动计划。迄今为止,新生儿筛查尚未纳入比利时各自的地区性新生儿筛查项目,布鲁塞尔地区和列日地区正在进行的举措没有获得更多资金,通过实施具体行动更好地管理该疾病在比利时尚未被视为公共卫生优先事项。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3fac/7548905/9e6106d22e28/IJNS-04-00037-g001.jpg

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