At the European Society of Cardiology Congress in Paris Pof. dr. B. Mulder talked about the Note Registry.
Adults with congenital heart disease (CHD) often have atrial arrhythmias; about 3% 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 moments: first telephone contact after 6 months and then once a year during the regular outpatient visits at your own cardiologist.