OUTREACH

2021

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:

  1. identifying better parameters for risk assessment and early detection of heart failure or ventricular arrhythmias in ConHD patients with outflow tract defects.
  2. 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.

Origin
The Dutch Heart Foundation and Stichting Hartekind, who collaborate within the Dutch CardioVascular Alliance, initiated an invitational grant to start and fund large-scale research aimed at earlier detection and better treatment of the consequences of congenital heart defects.

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Funded

Contact person:

Prof. W.A. Helbing (Wim)

Principal investigators

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The eCG Family Clinic

2020
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 Origin This project is funded within the Innovative Medical Devices Initiative (IMDI) program 'Heart for Sustainable Care'. The focus of this program is the development of medical technology for the earlier detection, monitoring, and better treatment of cardiovascular diseases to ensure accessible healthcare and sufficient staffing. The program has been developed en funded by the Dutch Heart Foundation, ZonMw and NWO, who collaborate within the Dutch CardioVascular Alliance.
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ECG project UMCU

2020
The correct interpretation of electrocardiograms (ECGs) is crucial for accurately diagnosing cardiac abnormalities. Current methods, both manual by physicians and computerized, have not achieved the level of accuracy comparable to cardiologists in detecting acute cardiac issues. Leveraging advancements in artificial intelligence and big data, particularly deep neural networks, offers promising avenues to improve ECG interpretation where traditional methods have fallen short. The ECG-Project develops deep learning algorithms to automate ECG interpretation, particularly focusing on areas where current methods are inadequate. Through this research, we aim to revolutionize ECG interpretation, improving diagnostic accuracy, reducing healthcare resource utilization, and ultimately enhancing patient outcomes. The Research The project objectives are: WP1: Creating an algorithm capable of accurately and swiftly triaging ECGs through transfer learning, uncovering features in diseases with unknown ECG characteristics (such as primary arrhythmia syndromes and genetic disorders). WP2: design a portable multi-lead ecg-device, suitable for use by patients at home and healthcare professionals. This device will enable high-quality ECG acquisitions for rapid diagnosis. Origin This project is funded within the Innovative Medical Devices Initiative (IMDI) program 'Heart for Sustainable Care'. The focus of this program is the development of medical technology for the earlier detection, monitoring, and better treatment of cardiovascular diseases to ensure accessible healthcare and sufficient staffing. The program has been developed en funded by the Dutch Heart Foundation, ZonMw and NWO, who collaborate within the Dutch CardioVascular Alliance.
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