title: KinCor, a national registry for paediatric patients with congenital and other types of heart disease in the Netherlands: aims, design and interim results.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Erasmus University Medical Centre, Rotterdam, The Netherlands. l.silva@erasmusmc.nl.
authors.forename: L M
authors.initials: LM
authors.lastname: Silva
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Academic Medical Centre, Amsterdam, The Netherlands.
authors.forename: I M
authors.initials: IM
authors.lastname: Kuipers
authors.affiliation: Department of Paediatric Cardiology, Beatrix Children's Hospital, University Medical Centre Groningen, University of Groningen, Groningen, The Netherlands.
authors.forename: F
authors.initials: F
authors.lastname: van den Heuvel
authors.affiliation: Health E‑Solutions, Rotterdam, The Netherlands.
authors.forename: R
authors.initials: R
authors.lastname: Mendes
authors.affiliation: Department of Paediatric Cardiology, Beatrix Children's Hospital, University Medical Centre Groningen, University of Groningen, Groningen, The Netherlands.
authors.forename: R M F
authors.initials: RM
authors.lastname: Berger
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors.forename: I M
authors.initials: IM
authors.lastname: van Beynum
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Leiden University Medical Centre, Leiden, The Netherlands.
authors.forename: L
authors.initials: L
authors.lastname: Rozendaal
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, VU Medical Centre, Amsterdam, The Netherlands.
authors.forename: L A J
authors.initials: LA
authors.lastname: Rammeloo
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Utrecht University Medical Centre, Utrecht, The Netherlands.
authors.forename: G G
authors.initials: GG
authors.lastname: van Iperen
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Radboud University Medical Centre, Nijmegen, The Netherlands.
authors.forename: M
authors.initials: M
authors.lastname: Schokking
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Maastricht University Medical Centre, Maastricht, The Netherlands.
authors.forename: S
authors.initials: S
authors.lastname: Frerich
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Academic Medical Centre, Amsterdam, The Netherlands.|Department of Paediatrics, Division of Paediatric Cardiology, Leiden University Medical Centre, Leiden, The Netherlands.|Department of Paediatrics, Division of Paediatric Cardiology, VU Medical Centre, Amsterdam, The Netherlands.
authors.forename: N A
authors.initials: NA
authors.lastname: Blom
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Utrecht University Medical Centre, Utrecht, The Netherlands.
authors.forename: J M P J
authors.initials: JM
authors.lastname: Breur
authors.affiliation: Department of Paediatrics, Division of Paediatric Cardiology, Erasmus University Medical Centre, Rotterdam, The Netherlands.
authors.forename: W A
authors.initials: WA
authors.lastname: Helbing
keywords: Child; Congenital; Database; Heart disease; Paediatric; Registry