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.

Dirkjan Kauw defended his thesis in 2021. The aim of this thesis was to investigate the use of eHealth in the care of adult patients with congenital heart disease (ACHD) and its current and future perspectives. The benefits and challenges of using eHealth in daily practice in ACHD patients were examined and patient groups were identified that could potentially benefit from the use of eHealth.
Below is a summary:

 * We explored the benefits of using different eHealth applications in the care of ACHD patients. Our literature review showed that there is still limited data on the use of eHealth applications in ACHD patients and that most studies to date have focused on pediatric patients. The most widely used application of eHealth in ACHD patients was the home monitoring of infant body weight and oxygen saturation between corrective surgeries. These studies showed positive results: Better survival, fewer complications and an improved nutritional status. These results show that the use of eHealth applications in ACHD patients can show promise and make a positive contribution to the daily care of these patients.

* We examined the experiences of users of eHealth telemonitoring programs and identified the challenges that need to be overcome to improve future eHealth programs. To this end, we conducted semi-structured interviews with cardiologists, nurses, patients, healthcare managers and IT developers and consulted a lawyer to identify key regulatory hurdles for these programs. This showed that different challenges were experienced in the different subgroups, indicating that collaboration between all parties involved is essential for a successful implementation of an eHealth.

Patients with chronic heart disease are mentioned as a group at extra risk during infection with the coronavirus (rivm.nl). This mainly concerns older people (> 70 years),
people with heart failure, people with angina pectoris, people with residual damage to the heart after a heart attack, people with a heart rhythm disorder or people with heart valve problems (hartstichting.nl). 

The Congenital Cardiology working group (which deals with adults with congenital heart defects in the Netherlands) would like to emphasize that
the working group also considers a patient to be vulnerable if there is:

• A circulatory system in which a single ventricle pumps blood through the lungs as well as throughout the body (univentricular heart)
• A Fontan circulatory system
• A chronically low blood oxygen level
• High blood pressure in the pulmonary artery (pulmonary hypertension), including Eisenmenger's syndrome
• Reduced pumping function of the heart for which you are taking medication
• People with a congenital heart defect who are on the waiting list for surgery on the heart and/or pulmonary artery (either by surgery or via the blood vessels/catheterisation)

 In addition:
There have been reports in the media about the risks of using certain heart medications in relation to the severity of a corona infection. These are medicines that end in -pril (e.g. perindopril, lisinopril, enalapril; the so-called ACE inhibitors) and end in -artan (e.g. losartan, candesartan, irbesartan; the so-called angiotensin II inhibitors). These two drugs are important for patients with heart failure and/or high blood pressure. There is no evidence for additional risks and there is even evidence that these drugs protect against corona infection. It is therefore important that you continue to take your medicines and not just stop! If the insights change, we will of course let you know.
If you have any questions about the above, please call your GP or attending cardiologist for advice about your specific situation.