CUSTOM-AF

Cardiovascular disease (CVD) is the leading global cause of mortality and morbidity, with ischemic heart disease (IHD) representing approximately half of all CVD-related deaths. Precise, personalized risk assessment and treatment recommendations are crucial for addressing the diverse population at risk of CVD. Current standard approaches rely on algorithms that incorporate a limited set of traditional risk factors to estimate CVD and IHD risk. However, significant cardiovascular events often occur in individuals categorized as low risk, underscoring the need for ongoing research to enhance preventive strategies. The Focus The MyDigiTwin initiative aims to provide individuals with personalized insights into their cardiac health, enabling proactive monitoring and management of cardiovascular conditions. This integrated digital health platform empowers individuals to take control of their cardiac health by offering accessible, data-driven insights and tools. The Research MyDigiTwin is a pioneering research initiative focused on revolutionizing cardiac health management by integrating advanced AI technologies with extensive patient data. The development of MyDigiTwin involves harnessing large-scale longitudinal datasets from over 500,000 patients, combined with sophisticated AI algorithms. This approach enables the platform to analyze diverse health parameters and generate tailored recommendations for users based on their unique health profiles. By leveraging AI and comprehensive patient data, MyDigiTwin represents an innovative approach to preventive and personalized healthcare, facilitating early detection and intervention for cardiovascular conditions. Origin This project was funded within the Big Data & Health Program. The focus of this public-private research program is the use of big data for the early detection and prevention of cardiovascular diseases. The program has been developed by NWO, ZonMw, the Dutch Heart Foundation, the Top Sectors Life Sciences & Health (LSH), ICT and Creative Industry, the Ministry of Health, Welfare and Sport, and the Netherlands eScience Center. Within this research program, the ambitions of the Dutch Heart Foundation, the Ministry of Health, Welfare and Sport, and the Netherlands eScience Center were aligned with the ambitions of Commit2Data for the Top Sectors ICT, LSH, and Creative Industry, as described in the 2018-2019 Kennis- en Innovatiecontracts between NWO and the Top Sectors.

CardioResource will be the first national registry for patients with hereditary cardiac conditions. By making available, amongst others, clinical data, imaging, and genetic data of all seven largest Dutch University Medical Centers, CardioResource will enable breakthrough research into these disorders. This will lead to more accurate diagnosis and improved understanding of the risk of developing disease and severe complications for patients and their families. It will also facilitate the development of novel therapies for more effective and targeted treatment of these life-threatening conditions. The research Over the past few decades, researchers have made significant progress in identifying inherited heart diseases. In many cases, these conditions can be traced to a defect in a single gene. However, for approximately half of patients, the underlying genetic cause remains unclear because it often involves variations in multiple genes, combined with other clinical, acquired, and/or lifestyle factors. Understanding how these factors conspire to determine disease risk and severity necessitates access to larger and comprehensive datasets. A vast amount of patient data is already available within the university medical centers (UMCs). However, these data are stored in separate systems at each institute and are therefore fragmented and inaccessible for research. CardioResource aims to address this challenge by harmonizing data across UMCs and making them available for research through a national research infrastructure, in a privacy-preserving manner. To achieve this, CardioResource is developing an innovative data infrastructure based on the FAIR principles: Findable, Accessible, Interoperable, and Reusable. The platform will be continuously updated with the latest patient information, creating a sustainable resource for cardiovascular research nationwide. The origin The Dutch research community has a long-standing track record in the field of inherited cardiac conditions. Over the years, numerous databases have been established for individual studies. However, the manual development and maintenance of these databases require substantial time and effort. To address this challenge, the community came up with the idea for CardioResource. The NWO Research Infrastructure program for national consortia provided the opportunity to finance the CardioResource project. The initiative brings together all seven Dutch UMCs, the NLHI, NHR, Dutch Heart Foundation, Hartekind Foundation, DCVA, and Health-RI. This broad partnership reflects the national need to strengthen cardiovascular data infrastructure and aligns with the ambitions of the DCVA and Health-RI to enable FAIR and reusable health data. Multidisciplinary teams across the participating UMCs will jointly establish the infrastructure. This close collaboration is essential for creating a sustainable and valuable resource that will ultimately benefit patients with inherited cardiac conditions.