CONgenital CORvitia Project group BJM Mulder, AMC Amsterdam ET van der Velde, LUMC Leiden J Vis, ICIN CJM Engelfriet-Rijk, ICIN I Harms, ICIN S Mantels, ICIN Steering committee BJM Mulder, chairman, ICIN ET van der Velde, LUMC Leiden ECM Mariman, AZM Maastricht FJ Meijboom, Radboud UMC Nijmegen HW Vliegen, LUMC Leiden G Veen, VUMC Amsterdam PG Pieper, UMC Groningen HWM Plokker, St Antonius Hospital Nieuwegein APJ van Dijk, Radboud UMC Nijmegen JLM Stappers, AZM Maastricht JW Roos-Hesselink, EMC Rotterdam JGP Tijssen, AMC Amsterdam RMF Berger, UMC Groningen GJ Sieswerda, UMC Utrecht National registry and DNA-bank of adults with congenital heart disease www.CONCOR.net Number of participating hospitals: 103 Number of patients Number of included patients: 10,035 12000 VSD ASD Aortic coarctation Tetralogy of Fallot Pulmonary valvar stenosis Aortic valvar stenosis Bicuspid aortic valve Marfan syndrome Total patients included DNA obtained 10000 8000 6000 608 4000 531 Transposition of great arteries ASD I Subvalvar aortic stenosis Ebstein Congenital correction TGA Pulmonary atresia +VSD Mitral valval prolapse Other diagnoses (<1%) 449 387 306 747 2000 932 -07 20 -01 1283 08 -07 08 20 -01 20 07 -07 07 20 -01 06 20 -07 20 06 -01 05 05 20 20 -01 -07 04 20 20 04 -07 -01 03 03 20 20 -07 20 02 02 -01 0 20 196 154 116 93 86 Year-Month 982 1474 Figure 1. Progress of inclusion. 1685 Figure 2. Most frequent main diagnoses. 40 30 20 10 All University hospitals Non-university hospitals Congenital correction TGA Ebstein Subvalvar aortic stenosis ASD I Transposition of great arteries Marfan syndrome Bicuspid aortic valve Aortic valvar stenosis Pulmonary valvar stenosis Tetralogy of Fallot Aortic coarctation ASD 0 VSD Percentual increase in 2008 The CONCOR registry and DNA-bank aid in the unraveling of genes involved in congenital heart disease. Main diagnosis Figure 3. Increase in included patients in 2008, per main diagnosis. Also: increase in university hospitals versus non-university hospitals 118 16-17 October 2008, CONCOR research nurses visited the Maastricht University Medical Center. A total of 71 new candidates were found; from 36 other patients blood was obtained for the CONCOR DNA-bank. Netherlands Heart Journal, Volume 17, Number 3, March 2009