Quality assurance measures in the CONCOR national registry and DNA-bank of patients with congenital heart disease in the Netherlands

A national registry and DNA-bank of adults with congenital heart disease has been instigated in the Netherlands to investigate long term outcome and the molecular basis of congenital heart defects. All eight academic medical centers in the Netherlands are participating in the CONCOR-project (CONgenital CORvitia). To assure the quality of the data in the registry, a large number of quality control (QC) measures have been implemented. Some of the items that are checked are: incomplete entries, correct patient-ID and birth-date, possible duplicate patient entries and correctness of registered events. The CONCUR registration has started in January 2002. Presently (September 2003) 2750 adult patients with congenital heart disease are registered; from 58% of these patients DNA has already been obtained. The quality checks that have been implemented improve and assure the accuracy of the contents of the registry.