The CONCOR registry
The CONCOR registry was started in 2002 and was set up to identify how many adult patients with congenital heart disease in the Netherlands live and what problems may arise in the longer term. By existing knowledge and expertise together to improve the care for these patients in the future. It is unknown how many adult patients with congenital heart disease exactly in the Netherlands and the overseas territories of the (United) Kingdom of the Netherlands are born. We also know of many - mostly operated - defects not how the course will be long term. The Dutch Heart Foundation and the Netherlands Heart Institute have jointly initiated a registry and DNA bank of adults with congenital heart disease.
Each year approximately 1,500 children are born in the Netherlands with a heart defect. Prognosis and life expectancy of these patients have greatly improved over the past decades, especially as a result of the development of new operative techniques. As a consequence of the successes of cardiac surgery, the majority of these children now reach adulthood. This implies the emergence of a new category of patients: adults who were born with a heart defect (congenital heart disease).
Information about the CONCOR DNA bank
In recent years, interest in genetic causes of congenital heart defects increased. DNA is present in all cells of the body and potentially the same everywhere. With modern techniques it is possible to search for the genetic basis of congenital heart defects. Results from these studies may have clinical consequences in the future: -Knowledge of the genetic causes of congenital heart defects may result in patients with congenital heart disease who have a child to get better informed about the risk of repetition ("genetic counselling"). -Possibly the knowledge of the genetic background of congenital heart defects in the future lead to changes in treatment of patients with congenital heart disease.
Every investigator can send in a request for data (and DNA material) from the CONCOR registry for the purpose of a specific scientific question .More than 16.000 patients from 102 hospitals have been included. Of 5600 of these patients blood samples for DNA analysis have been collected.
CONCOR has resulted in hundreds of scientific publications and dozens of doctoral thesis. As of 2016, the Netherlands Heart Institute employs 4 PhD students and 2 research nurses for the CONCOR registry. See http://concor.net/ for more information