Silva L M, Kuipers I M, van den Heuvel F, Mendes R, Berger R M F, van Beynum I M, Rozendaal L, Rammeloo L A J, van Iperen G G, Schokking M, Frerich S, Blom N A, Breur J M P J, Helbing W A
Department of Paediatrics, Division of Paediatric Cardiology, Erasmus University Medical Centre, Rotterdam, The Netherlands.
Department of Paediatrics, Division of Paediatric Cardiology, Academic Medical Centre, Amsterdam, The Netherlands.
Neth Heart J. 2016 Nov;24(11):628-639. doi: 10.1007/s12471-016-0892-9.
Studies in children with heart disease have been hampered by a lack of easily identifiable patient groups. Currently, there are few prospective population-based registries covering the entire spectrum of heart disease in children. KinCor is a Dutch national registry for children with heart diseases. This paper presents the aims, design and interim results of the KinCor project.
All children presenting at a Dutch university medical centre with a diagnosis of heart disease from 2012 onwards were eligible for registration in the KinCor database. Data entry is through a web-based portal. Entry codes have been synchronised with the European Paediatric Cardiac Coding system, allowing coupling with similar databases for adults, such as CONCOR.
Between June 2012 and July 2015, 8421 patients were registered (76 % of those eligible). Median age of the patients was 9.8 years, 44.7 % were female; 6782 patients had morphological congenital heart disease. The most prevalent morphological congenital heart defects were ventricular septal defects (18 %), Tetralogy of Fallot (10 %) and transposition of great arteries (9 %). For 42 % of the patients additional diagnoses were registered. Sixty percent of patients had undergone at least one intervention (catheter intervention or surgery).
The KinCor database has developed into a large registry of data of children with all types of heart disease and continues to grow. This database will provide the opportunity for epidemiological research projects on congenital and other types of heart disease in children. Entry codes are shared with the CONCOR database, which may provide a unique dataset.
由于缺乏易于识别的患者群体，儿童心脏病研究受到了阻碍。目前，几乎没有前瞻性的基于人群的登记系统涵盖儿童心脏病的全谱。KinCor是荷兰一个针对儿童心脏病的国家登记系统。本文介绍了KinCor项目的目标、设计和中期结果。
自2012年起，所有在荷兰大学医学中心被诊断为心脏病的儿童均有资格在KinCor数据库中登记。数据通过基于网络的门户录入。录入代码已与欧洲儿科心脏编码系统同步，从而能够与成人的类似数据库（如CONCOR）进行关联。
在2012年6月至2015年7月期间，登记了8421名患者（占 eligible患者的76%）。患者的中位年龄为9.8岁，44.7%为女性；6782名患者患有形态学先天性心脏病。最常见的形态学先天性心脏缺陷是室间隔缺损（18%）、法洛四联症（10%）和大动脉转位（9%）。42%的患者有其他诊断记录。60%的患者至少接受过一次干预（导管介入或手术）。
KinCor数据库已发展成为一个包含各类心脏病儿童数据的大型登记系统，且仍在不断增长。该数据库将为儿童先天性及其他类型心脏病的流行病学研究项目提供机会。录入代码与CONCOR数据库共享，这可能会提供一个独特的数据集。
