The eCG Family Clinic


Inherited cardiovascular diseases often run in families, with a 50% chance of passing on the disease-causing genetic defect to children. When a genetic mutation is found in the first family member diagnosed (called the proband), other relatives can get tested to see if they have the same mutation and – when they are carrier - be monitored and timely treated if needed. Unfortunately, less than half of the at-risk relatives don't seek genetic counseling in the first years of the proband's diagnosis. The eCG (electronic Cardiovascular Genetics) Family Clinic was created to stimulate families to test themselves after the diagnosis of the proband by making this process easier and more accessible.

The Research

In the eCG Family Clinic consortium, a team of software experts, doctors, and specialists in ethics, law, economics, communication, and psychology work together to develop and implement a virtual clinic that offers personalized information and support through a virtual assistant, allowing relatives to make informed decisions about testing and treatment.

Because this consortium believes that involving all possible affected stakeholders is crucial for its success, it frequently consults with probands, family members, healthcare professionals, and advocates to understand their needs. The prototype is designed while keeping the important economic, ethical, and legal aspects of this new approach in mind. The prototype of the eCG Family Clinic is tested in real healthcare settings to see how well it works compared to current practices

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Contact person:

Dr. M.A. Siemelink

Principal investigators

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The successful treatment of congenital heart disease (ConHD) has greatly increased the survival of children with this condition. Many of these defects require surgical or catheter interventions immediately after birth. However, complete restoration of the defect is often unachievable, a high risk of developing heart failure, arrhythmias, sudden cardiac death or blood vessel dilatation or stenosis relatively early in life. Currently, there is a lack of personalized risk predictors and optimal clinical decision tools, highlighting an unmet need to develop new effective strategies for treating and preventing ventricular failure, arrhythmias, and large vessel diseases. The Focus The OUTREACH consortium focuses on specific types of congenital heart diseases (ConHD) related to outflow tract defects, such as transposition of the great arteries, congenital aortic stenosis, and tetralogy of Fallot, which collectively account for over half of all ConHD cases. The goal of OUTREACH is to reduce the risk of mortality and morbidity and improve the quality of life for these patients (both children and adults) by improving follow-up practices based on outcomes, implementing personalized risk assessment tools, and advancing therapeutic strategies. The Research The OUTREACH consortium integrates expertise in preclinical research, developmental biology, disease modeling, and clinical research from academic centers specializing in pediatric and adult congenital cardiology and surgery. Its objectives are: identifying better parameters for risk assessment and early detection of heart failure or ventricular arrhythmias in ConHD patients with outflow tract defects. Exploring efficient treatments to enhance adaptation and prevent heart failure and vascular damage in at-risk ConHD patients. This consortium conducts extensive research involving a large cohort of ConHD patients to unravel the underlying causes and mechanisms of cardiac adaptations following surgical interventions. It investigates the molecular mechanisms responsible for outflow tract defects and evaluates whether stimulating heart regeneration in ConHD models can mitigate adverse remodeling and heart failure. Additionally, the consortium explores new non-invasive imaging techniques and blood-derived biomarkers to develop innovative risk analysis tools for clinical decision-making. 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 towards optimizing the quality of care for the ConHD population and fostering scientific research on ConHD.
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In the past decade, there has been significant progress in understanding sex- and gender-based differences in cardiovascular diseases (CVD). However, this knowledge remains scattered across medical literature, highlighting the need for a centralized platform accessible to healthcare professionals, scientists, policymakers, and patients. The IMPRESS consortium aims to establish a knowledge platform focused on gathering, summarizing, and prioritizing existing knowledge related to sex- and gender-specific aspects of CVD. This initiative seeks to promote the implementation of existing knowledge into clinical practice, identify knowledge gaps, and inform policymakers about areas requiring additional attention. In substantial portions of women with symptoms of myocardial ischemia, obstructive disease in the epicardial coronary arteries is absent. Currently, such women undergo multiple diagnostic tests, which do not always result in a conclusive diagnosis. IMPRESS seeks to reduce missed and delayed diagnoses of heart diseases in women, improving cardiovascular care outcomes nationwide. The knowledge platform will serve as a national resource, fostering collaboration and supporting the adoption of sex- and gender-sensitive practices in cardiovascular medicine. The Research IMPRESS consolidates existing knowledge, fosters research, and implements findings into practice wherever possible (for example by creating a Decision Support Tool for primary care and for cardiologists). Within the IMPRESS consortium, the following studies are being conducted: Delphi study: delayed or missed diagnosis of heart disease Silent heart attacks: causes, symptoms, and risk factors of silent myocardial infarctions UMCU-IMPRESS pilot study: undetected coronary microvascular disease (CMD) Peripheral-Flow: LASCA technique in CMD Dutch registry of coronary function tests
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