In 2004, the working group on hereditary cardiac diseases of the Netherlands, representing cardiologists, clinical geneticists and molecular geneticists (with special interest in cardiogenetics) of all academic centres in the Netherlands, took the initiative to set-up GENCOR (GENetic CORvitia). GENCOR aims to facilitate studies into the prevalence of familial heart diseases in the Netherlands and to promote research to improve the quality of diagnostics and therapy in familial heart diseases.
Patients with primary cardiac arrhythmia syndromes (ion channelopathies) or secondary cardiac arrhythmia syndromes (cardiomyopathies) are potential candidates for the registry. Only when a mutation has been identified the patient is included in the registry. Patients with structural congenital heart defects (e.g. Tetralogy of Fallot, aortic coarctation, ventricular septal defect and atrial septal defects, aortic valvar stenosis) or Marfan syndrome are excluded from participation. They are included in CONCOR
Patients receive information about the aims and procedures of the GENCOR registry from their cardiologist / clinical geneticist during their visit to the outpatient clinic. Patients genotyped in the past receive the information at home. Patients are asked to sign a consent form and return it to their medical practitioner before data will be stored in the GENCOR database.
GENCOR is an internet-based registry. The patient data are extracted from patient records from the departments of cardiology and clinical genetics from the UMCs. Each patient is assigned with a unique GENCOR number, so identifying information is not available in the GENCOR registry. Only a limited set of data is stored in one central database and hosted via Netherlands Heart Institute.