Aneurysm-NL

2025

An aneurysm is a bulging or dilation of a blood vessel that usually causes no symptoms but can become life-threatening if it ruptures. It most commonly occurs in the body’s main artery (aorta) or in the brain arteries. Each year, thousands of people in the Netherlands are diagnosed with an aneurysm. The national initiative Aneurysm-NL brings together knowledge and research to improve diagnosis and treatment. By fostering collaboration between physicians, researchers, and patients, we aim to detect aneurysms earlier and treat them more safely, ultimately improving care and reducing mortality from this condition.

The Research

Aneurysm-NL aims to build a sustainable, nationwide infrastructure that connects medical centers, researchers, and patients to accelerate innovation in aneurysm research and care. A central focus is the development of a national data platform that integrates clinical records, imaging, biobank samples, and genetic information. This resource will allow researchers to reconstruct lifetime disease trajectories, improve risk prediction, and enable more personalized treatment.

In parallel, the project develops advanced research tools, including patient-derived in vitro aneurysm models and large-scale omics-approaches to identify new therapeutic targets. By integrating clinical insights with computational modeling and real-world outcome data, Aneurysm-NL supports better decision-making and more effective interventions for both aortic and cerebral aneurysms. It also evaluates the safety and effectiveness of current endovascular and neurosurgical treatments for unruptured brain aneurysms through a large multicenter study.

Aneurysm-NL also invests in building a strong and inclusive research community. The project emphasizes collaboration between researchers, clinicians, and patients, and actively works toward linking its infrastructure to national registries and existing healthcare data sources to ensure long-term sustainability and broad accessibility. By uniting expertise from across the country, Aneurysm-NL strives to generate new knowledge, enable earlier and more accurate diagnosis, and personalize treatment strategies for aneurysm patients.

The Origin

The Aneurysm-NL consortium was established following an exploratory initiative within the Dutch CardioVascular Alliance (DCVA), aimed at identifying opportunities for a national approach to aneurysm research. Based on this exploration, Barend Mees, Hanneke Takkenberg and Mervyn Vergouwen were appointed as coordinators to lead the formation of the consortium. Following a national call in April 2024, they brought together clinicians, researchers and patients from across the Netherlands to collaborate in this new initiative. With funding from the Dutch Heart Foundation, Aneurysm-NL now aims to grow into a nationwide network and data infrastructure, uniting clinical and scientific expertise to advance aneurysm research and care in the coming years.

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Collaborators

Funded

Contact person:

Naomi Kakiailatu, Project manager

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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HEROES

2020
The focus of this project is to develop a novel home-based exergaming system aimed at enhancing resistance to falls among individuals post-stroke. Preventing falls and fall-related injuries, minimizes healthcare utilization and societal costs and supports stroke survivors in maintaining independence in daily life. The Research The HEROES system is designed to target balance perturbations and improve stepping responses. It utilizes action observation and motor imagery techniques to personalize training for individuals with stroke. Stroke survivors will undergo a single training session in a rehabilitation center to practice recovering from real balance perturbations before using HEROES at home. The effectiveness of the HEROES-system will be assessed through a proof-of-principle randomized controlled trial (RCT) involving 60 stroke survivors, evaluating its impact on fall resistance and balance enhancement post-stroke. The approach of involving stroke survivors sets HEROES clearly apart from the currently available home-based exergames, which uses ‘healthy’ people and lack the required personalization of different post-stroke individuals. 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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