The eCG Family Clinic

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.

Familial Hypercholesterolemia (‘FH’) is the most prevalent genetic cause of premature atherosclerotic cardiovascular disease (ASCVD). FH has an estimated prevalence of 1:300 in the general population in the Netherlands. FH is characterized by lifelong elevation of LDL cholesterol, resulting in a profoundly increased risk of coronary heart disease (CHD) and premature death. Early identification of FH and intensive LDL cholesterol management are essential to minimize the lifetime cumulative cholesterol burden and associated risks. FH is inherited. Typically, parents with one pathogenic mutation have a 50% chance of passing down the condition to each child. Therefore, it is essential to screen first degree relatives (children, parents, brothers & sisters) of an individual diagnosed with FH, to detect other family members who may have inherited FH. LEEFH network In the Netherlands we have long track record with FH index identification, cascade screening of first degree relatives and associated research activities. Stichting LEEFH support healthcare professionals pro-actively to pursue cascade screening, aiming to identify FH-patients as early as possible. LEEFH works in a voluntary network with 39 hospitals (LEEFH centres) to optimize FH care and cascade screening. Over the years, an active database has been built up with approximately 7,000 family pedigrees and more than 37,000 FH positive tested patients. Annually, we detect ~ 300 FH+ indexes (new FH families) and 500 FH+ family members by cascade screening. A unique example of early prevention. The Research LEEFH supports research activities in the field of FH detection and treatment with its acquired knowledge, database and network. Recent examples of this include FH identification via central laboratory data, electronic health records and general practitioners. We also participate in research projects with other genetic disorders in order to further improve cascade screening through knowledge sharing (for example in the consortium ‘eCG Family Clinic’ (e-Cardiovascular Genetics Family Clinic). The Orgin The LEEFH network is a voluntary partnership since 2013. 39 hospitals are now affiliated. Each hospital (LEEFH center) has a number of healthcare professionals with a great deal of knowledge and affinity with FH. The LEEFH network aims to prevent (unnecessary) cardiovascular diseases by a) detecting FH family members through cascade screening and b) creating more awareness about FH. We do a lot of knowledge sharing about FH, both among ourselves and also through regional meetings with families and general practitioners. We have signed network agreements with ‘who’ does ‘what’ and ‘when’ in the cascade screening . The aim is to inform and support each family in the right way in the cascade screening. The DNA diagnostics are carried out by the Amsterdam UMC. Application forms and test packages are available via Stichting LEEFH.