Every year approximately 1,400 children are born with a congenital heart defect in the Netherlands. The life expectancy of these patients has improved significantly in the last decennium mostly due to the increased possibilities in the area of heart and blood vessel surgery. The successful results of heart surgery have resulted in a great majority of these children reaching adulthood. It is estimated that there are more than 25,000 adults momentarily with congenital heart defects and the numbers are growing at the rate of approximately 5% per year. Besides this there are approximately 25,000 children with a congenital heart defect bringing the total patient population to an estimated total of 50,000.
CONCOR co-ordinates the national registration of clinical data and DNA from patients 18 years of age or more for scientific research purposes. A diverse range of disorders fall within the constraints of congenital heart disease. Adults with congenital heart defects, form a new, relatively young patient population about which there is still little known. It is however well clear that a large number of these patients develop complications in the long term. Scientific research is needed for more insight in this aspect. Research should also identify possible genetic causes. More and more genes are being identified that play a role in the development of the heart. It is necessary to have access to a large research population in order to achieve successful research. The compilation of data by CONCOR makes this possible.
The CONCOR Pearl does not fall under the responsibility of one of the UMC's but under the Interuniversitair Cardiologisch Instituut Nederland (ICIN). As a result of this collaboration CONCOR can make use of the PSI infrastructure whereby the collection and actualisation of data is more efficient. This improves the quality of the data and in return also the research results. Read more