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Quality of life study

Project summary

In the Netherlands, 1 in 100 children are born with a heart defect, which means 4 children per day. About half of them have a serious heart defect, which requires surgery. This long-term study of almost 50 years is unique in the world, because all patients are invited every 10 years for a comprehensive medical and psychological evaluation. This allows us to give a very detailed description of what happens to the operated heart as we age.


With this research we want to find out new facts that will ultimately lead to an improvement in the life expectancy of people with a congenital heart defect and also optimize their quality of life.

More detailed information

Principal Investigator:

prof. dr. Jolien Roos-Hesselink, dr. Martijn Kauling en dr. Judith Cuypers

Role Erasmus MC:




Project website:

Funding Agency:

Erasmus MC Thorax Foundation