Ombelet Fouke, Goossens Eva, Willems Ruben, Annemans Lieven, Budts Werner, De Backer Julie, De Groote Katya, Moniotte Stéphane, Van Bulck Liesbet, Marelli Ariane, Moons Philip
KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven - University of Leuven, Leuven, Belgium.
KU Leuven Department of Public Health and Primary Care, Academic Center for Nursing and Midwifery, KU Leuven - University of Leuven, Leuven, Belgium; Research Foundation Flanders (FWO), Brussels, Belgium; Faculty of Medicine and Health Sciences, Centre for Research and Innovation in Care, Division of Nursing and Midwifery, University of Antwerp, Antwerp, Belgium.
Int J Cardiol. 2020 Oct 1;316:72-78. doi: 10.1016/j.ijcard.2020.05.059. Epub 2020 May 27.
Congenital heart disease (CHD) entails a broad spectrum of malformations with various degrees of severity and prognosis. Consequently, new and specific healthcare needs are emerging, requiring responsive healthcare provision. Research on this matter is predominantly performed on population-based databases, to inform clinicians, researchers and policy-makers on health outcomes and economic burden of CHD. Most databases contain data either from administrative sources or from clinical systems. We describe the methodological design of the BELgian COngenital Heart Disease Database combining Administrative and Clinical data (BELCODAC), to investigate patients with CHD.
Data on clinical characteristics from three university hospitals in Belgium (Leuven, Ghent and Brussels) were merged with mortality and socio-economic data from the official Belgian statistical office (StatBel), and with healthcare use data from the InterMutualistic Agency, an overarching national organization that collects data from the seven sickness funds for all Belgian citizens. Over 60 variables with multiple entries over time are included in the database.
BELCODAC contains data on 18,510 patients, of which 8926 patients (48%) have a mild, 7490 (41%) a moderately complex and 2094 (11%) a complex anatomical heart defect. The most prevalent diagnosis is Ventricular Septal Defect in 3879 patients (21%), followed by Atrial Septal Defect in 2565 patients (14%).
BELCODAC comprises longitudinal data on patients with CHD in Belgium. This will help build evidence-based provision of care to the changing CHD population.
先天性心脏病（CHD）涵盖了广泛的畸形类型，其严重程度和预后各不相同。因此，新的特定医疗保健需求不断涌现，需要提供相应的医疗服务。关于这一问题的研究主要基于人群数据库进行，以便为临床医生、研究人员和政策制定者提供有关CHD的健康结果和经济负担的信息。大多数数据库的数据要么来自行政来源，要么来自临床系统。我们描述了比利时先天性心脏病行政与临床数据合并数据库（BELCODAC）的方法设计，以研究CHD患者。
比利时三家大学医院（鲁汶、根特和布鲁塞尔）的临床特征数据与比利时官方统计局（StatBel）的死亡率和社会经济数据，以及互助机构的医疗保健使用数据进行了合并。互助机构是一个全国性的总体组织，从七个疾病基金收集所有比利时公民的数据。该数据库包含60多个变量，这些变量随时间有多个条目。
BELCODAC包含18510名患者的数据，其中8926名患者（48%）有轻度、7490名患者（41%）有中度复杂和2094名患者（11%）有复杂的心脏解剖缺陷。最常见的诊断是室间隔缺损，共3879例患者（21%），其次是房间隔缺损，共2565例患者（14%）。
BELCODAC包含比利时CHD患者的纵向数据。这将有助于为不断变化的CHD人群提供循证护理。
