Creating the BELgian COngenital heart disease database combining administrative and clinical data (BELCODAC): Rationale, design and methodology. (1st October 2020)

• Record Type: Journal Article
• Authors: 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
• Is Part Of: International journal of cardiology. Volume 316(2020)
• Page Start: 72
• Page End: 78
• Publication Date: 2020-10-01
• Subjects: Congenital heart disease -- Database management systems -- Health services research -- Belgium; ACHD Adult Congenital Heart Disease -- ASD Atrial Septal Defect -- AVSD AtrioVentricular Septal Defect -- BELCODAC BELgian COngenital Heart Disease Database combining Administrative and Clinical data -- CBSS Crossroads Bank for Social Security -- CC-TGA Congenitally Corrected Transposition of the Great Arteries -- CHD Congenital Heart Disease -- CONCOR CONgenital CORvitia -- DILV Double Inlet Left Ventricle -- DORV Double Outlet Right Ventricle -- GDPR General Data Protection Regulation -- ICD International Classification of Diseases and Related Health Problems -- IMA InterMutualistic Agency -- INNR Identification Number of the National Register -- LVOT Left Ventricular Outflow Tract -- RN Random Number -- SLL Secure Socket Layer -- StatBel Statistics Belgium -- TGA Transposition of the Great Arteries, -- TTP Trusted Third Party -- VPN Virtual Private Network -- VSD Ventricular Septal Defect; Cardiology -- Periodicals; Electronic journals; 616.12
• DOI: 10.1016/j.ijcard.2020.05.059
• Languages: English
• ISSNs: 0167-5273

Abstract

Abstract: Background: 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. Methods: 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. Results: 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%). Conclusions: BELCODAC comprises longitudinal data on patients with CHD in Belgium. This will help build evidence-based provision of care to the changing CHD population. Highlights: BELCODAC includes clinical data on healthcare use and outcomes in patients with CHD. It is an alliance between universities, hospitals and governmental organizations. BELCODAC comprises longitudinal data on 18, 510 patients with CHD in Belgium. It will enable research on outcomes and economic burden of healthcare use in CHD.