Presentation international research tetralogy of Fallot in New Orleans

During the Congress of the American Heart Association in New Orleans in november 2016 presented research physician Jouke Bokma results of an investigation by the international Indicator Registry. It is the largest international registration of patients with tetralogy of Fallot. Using MRI scans they looked at the results of this patient group. The research that Dr. Bokma presented focused on the effect and usefulness of the operative pulmonary-valve replacement in patients with this congenital heart disease. There was not a clearly improved prognosis after undergoing this operation, but there may be a selective group of patients who will benefit from it. The results of this research can help make the indication and timing of this operation. It is expected that the findings of this study shortly to be published in an international scientific journal.

Prevention of thromboembolism:"The Note Registry"

Adults with congenital heart disease (CHD) often have atrial arrhythmias; about 23% at an average age of 28 years. The high risks for stroke or thrombosis are well-known in adults with atrial arrhythmias without a CHD. Therefore, these patients need to receive blood thinners to prevent stroke or thrombosis. Previous research has shown that (relatively) new blood thinners (NOACs) are just as effective and safe as the older blood thinner (Sintrom) in patients with an acquired atrial arrhythmias. Furthermore NOACs have two advantages compared with Sintrom, namely 1. Thanks to the more stable working of the drug, the regular blood monitoring at the thrombosis service is not needed, 2. The chance of getting brain hemorrhage (bleeding), one of the most serious complications of blood thinners is decreased by 50% compared with using Sintrom. Unfortunately, adults with a CHD are not examined in these studies. So it is not yet known whether these new blood thinners (NOACs) are also effective and safe in adults with CHD and atrial arrhythmias while they may offer to be a better alternative for Sintrom.
This study investigates how often strokes, thrombosis and bleeding occur under the use of NOACs in 2 years in adults with CHD and atrial arrhythmias. Furthermore, we measure the quality of life and treatment compliance. Any adult with CHD who uses NOACs can join this study. We contact the participating patient once a year to ask about the experience with the NOACs and you will also be asked to fill in questionnaires about the quality of life and treatment compliance.

Contact person: Hayang Yang,, tel: 020-5668679
Contact moments: first telephone contact after 6 months and then once a year during the regular outpatient visits at your own cardiologist.

ESC Congress 2016

The largest cardiovascular Conference in the world, organized by the European Society of Cardiology (ESC), was from Saturday 27 to 31 August 2016. The exchange of new scientific knowledge in cardiology is of great importance to life expectancy. Research has shown that 70 percent of the increased life expectancy measured between 1960 and 2000 is due to innovations in cardiology.


With the CONCOR researchers and foreign colleagues of the Working Group ISACHD (International Society for Adult Congenital Heart Disease) was the Congress concluded with a cosy dinner in Rome!

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