HEROES

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.

Habitual physical activity is beneficial for cardiovascular health. Yet, many patients with cardiovascular disease are sedentary, and current physical activity programs often fail to achieve lasting improvements. At the extreme end of the activity spectrum, more athletes engage in long-term, high-volume, high-intensity training.  Emerging evidence suggests that there may be an upper limit of exercise for heart health and exceeding this threshold may attenuate the benefits of an active lifestyle. The FIT-HEART consortium seeks to develop tailored physical activity interventions for cardiovascular disease patients and to investigate safe exercise limits for recreational and elite athletes. The research FIT-HEART has three main goals: Co-create, implement and evaluate an innovative program that promotes physical activity by integrating incentives from the individual’s (social) environment tailored to the needs of specific subgroups, which can be seamlessly integrated into healthcare systems across the Netherlands, with potential for future expansion to other patient groups and the broader population. Assess the upper limits of exercise on heart health in recreational and professional athletes by conducting prospective studies in unique cohorts. This approach integrates extensive cardiac phenotyping, wearable monitoring, novel AI technologies, digital twinning, immunophenotyping, and long-term evaluation of clinical outcomes. Establish and expand a multidisciplinary, synergistic consortium focused on sports, exercise, and heart health. Our mission is to nurture young talent, foster innovative cross-domain collaborations, and secure funding for ongoing and future research. In partnership with end-users, we will disseminate outcomes to professionals, patients, and the public, while raising awareness of the wide-ranging health benefits of an active lifestyle. The origin The FIT-HEART consortium emerged from a shared ambition among academic institutions, healthcare partners, patient organizations, and policymakers to address sedentary lifestyles in cardiovascular disease patients and to investigate the cardiac effects of extreme exercise in both elite and recreational athletes. This interdisciplinary initiative builds upon prior collaborative research in sports cardiology, preventive medicine, and behavioral interventions aimed at promoting physical activity. FIT-HEART is well-aligned with the strategic agendas of the Dutch Heart Foundation and the Dutch CardioVascular Alliance (DCVA), both of which prioritize innovative solutions to reduce the burden of cardiovascular disease. By integrating incentives from people’s social environment, the consortium aims to create personalized treatment options that encourage lasting physical activity, while taking into account subgroup-specific needs. In parallel, the integration of advanced cardiovascular methodologies enables FIT-HEART to identify recreational and professional athletes at an early stage who are at risk for adverse cardiovascular health outcomes.