The OUTREACH (outflow tract relates aging with congenital heart disease) consortium will study a large group of patients with congenital heart diseases and aims to identify causes and mechanisms of adaptations in the heart after surgical corrections in order to improve treatment. The consortium is led by prof. dr. Wim Helbing, prof. dr. Jeroen Bakkers and prof. dr. Mark Hazekamp and combines expertise in pre-clinical research, developmental biology, disease modeling and clinical researchers from all academic centers for pediatric and adult congenital cardiology / surgery.

Health care problem

Treatment of congenital heart disease (ConHD) is one of the successes of the 20th century. This has resulted in a very large increase of survival of all children with ConHD. Consequently, the prevalence of adults with ConHD has increased so that currently there are 1.4 million children and 2.4 million adults with ConHD in Europe. Unfortunately, survival is by no means event-free as ConHD patients have a high risk of developing heart failure, arrhythmias, sudden cardiac death or blood vessel dilatation or stenosis relatively early in life. To reduce the burden of cardiovascular morbidity in the aging ConHD patient we must recognize these late complications earlier and treat them better.

In OUTREACH we will focus on a group of ConHD mainly related to outflow tract defects, such as transposition of the great arteries, congenital aortic stenosis, and tetralogy of Fallot, comprising more than half of all ConHD. Directly after birth, many of these defects require surgery and/or catheter intervention. Unfortunately, complete restoration of the defect is often impossible, leaving residual lesions. These residual lesions may lead to complications later in life such as heart failure, arrhythmias and large vessel disease. At present we lack personalized risk predictors and optimal clinical decision tools and there is an unmet need to develop new effective strategies to treat and prevent ventricular failure, arrhythmias, and large vessel disease. Therefore it is the ambition of the OUTREACH consortium to reduce the risk of mortality and morbidity and increase quality of life of these patients (both children and adults) by improving outcome driven follow-up, individualized risk assessment and therapy. The scope of the OUTREACH consortium is 1) the search for better parameters for risk assessment and early diagnosis of heart failure or ventricular arrhythmias in ConHD patients with outflow tract defects, 2) to look for efficient treatments for improved adaptation and prevention of heart failure and or vascular damage developing in ConHD patients at risk. To reach these goals, the consortium will study the molecular mechanisms that are involved in the development of outflow tract defects and whether stimulation of heart regeneration in models for ConHD can prevent adverse remodeling and heart failure. Furthermore, our large national patient databases as well as new non-invasive imaging tools and blood-derived factors of patients will be used to develop new risk analysis tools for clinical decision making.

Importance of national patient registry

In OUTREACH a nationwide registry is created for all patients (children and adults) with ConHD in the Netherlands, by harmonizing existing registries KinCor and ConCor. This is an important step to optimize the quality of care for the ConHD population. Furthermore, a national registry will stimulate and facilitate scientific research on ConHD.

The OUTREACH program is financed by the Netherlands Heart Foundation and Stichting Hartekind. Our consortium combines experts in pre-clinical research, developmental biology, genetics and clinical researchers of all ConHD centers in the Netherlands.