Better insight into the consequences of congenital heart defects with unique database

People who were born with a construction flaw in their heart get a better idea of ​​the consequences of their condition. There will be a new database in which medical data will be kept from child to adult. This provides important new insights that can improve the lives of tens of thousands of heart patients. The database, which is unique in Europe, was made possible in part by the Hartekind Foundation and the Hartstichting. This is reported by the Heart Foundation.
"The development of this database is extremely important," says pediatric cardiologist Nico Blom (Center for Congenital Heart Defects Amsterdam-Leiden). "There are many people with a congenital heart defect, but the differences are very large. It is often difficult to make reliable predictions, for example about the expected effect of certain medicines or operations. The new database contains much more data, about a longer period, which makes research more feasible, so patients can get better information.” https://www.hartekind.nl/nieuws/meer-zicht-op-impact-van-aangeboren-hartaandoening-op-lange-termijn and https://www.hartstichting.nl/nieuws/meer-zicht-op-impact-aangeboren-hartaandoeningen

A lot of uncertainty; About 1 in 125 babies is born with a construction flaw in the heart. Thanks to better care and surgeries at a young age, the survival chances of these children have greatly improved. So there are more and more adults who have had heart surgery as children. They live with considerable uncertainty, because much knowledge about the long-term consequences is lacking. It is difficult for doctors to predict whether you are at high risk for a dangerous heart rhythm disorder, for example.

                                                                                                                                         

More research possible: The new database should change that. Data is kept in one central place. Until now, children's data was kept in a different database than adults' data. Merging the databases should lead to better care and tailor-made advice, tailored to the patient's personal situation.                                                                                                                                                                                                                                                                                         

New Approach: The Heart Foundation invests in the technology behind the database. It is therefore an investment in the preconditions of patient care and research. The new database is a combination of two large registrations: a database for children (KinCor) and a database for adults (CONCOR). The new database will be put into use at the beginning of 2022. It stores data from approximately 30,000 patients. The intention is to extend this to all people with a congenital heart defect in our country. This data is anonymous, so the researchers don't know who it is.