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Live-HCM/LIVE-LQTS

  • Research type

    Research Study

  • Full title

    Exercise in Genetic Cardiovascular Disease/Lifestyle and Exercise in Hypertrophic Cardiomyopathy/Lifestyle and Exercise in the LQT Syndrome/ “LIVE HCM“/LIVE LQTS“

  • IRAS ID

    205294

  • Contact name

    Maria Teresa Tome Esteban

  • Contact email

    mtome@sgul.ac.uk

  • Sponsor organisation

    St Georges University of London

  • Duration of Study in the UK

    3 years, 1 months, 0 days

  • Research summary

    Exercise is an integral part of life for millions of people. The benefits of exercise are well-known—improvement in longevity and quality of life (QOL). However, while data on safety of exercise for patients with genetic cardiovascular conditions such as hypertrophic cardiomyopathy (HCM,) or the Long QT Syndrome (LQTS) are sparse, the risk of sudden cardiac death due to vigorous competitive or recreational activities for these patients is thought to be prohibitively high and these patients are restricted from participation in not just competitive, but most recreational sports as well, by current consensus statements in both the US and Europe. However, preliminary data suggest that first, many LQTS and HCM patients are exercising despite the restrictions and second, that the risks may be lower than postulated, and that there may be detrimental effects of exercise restriction in these patients. Whether the risks of exercise outweigh the medical and quality-of-life benefits for patients with these diseases has never been evaluated prospectively.\nThis prospective observational study will investigate the risks and benefits of exercise for patients with HCM or LQTS in two parallel studies. The hypothesis is that risks of death, cardiac arrest, syncope, or appropriate ICD (INTERNAL CARDIOVERTER DEFIBRILLATOR) therapy will not be higher in those exercising moderately or vigorously than the sedentary, and that QOL will be greater in those exercising. Follow up is for three years. Results of this study will have an immediate and direct impact on patient care. If the hypotheses are correct, many more individuals will enjoy the benefits of exercise. If the hypotheses prove incorrect, those currently exercising need to know, and exploratory aims will investigate what phenotypic, clinical, genotypic, and sports-related factors may moderate the impact of exercise on arrhythmic outcomes, and will identify clinical and psychological variables to moderate the impact of exercise restriction on QOL. [COVID-19 amendment 16/06/2020; Participants in the LIVE study will be sent a and invitation to participate in a one-time set of ancillary questionnaires, which will include the baseline psychosocial battery, a follow-up activity form (as currently in use), and a newly created survey called the “Epi-pandemic impact inventory” which quantifies the impacts of the pandemic. Information regarding lifestyle, quality of life and exercise practice is already part of the current study. The additional information will reflect accurately the effect of the Covid-19 on their lives and will produce unique data from an already characterized population of patients. The additional information doe not alters the research design or methodology.\n\n

  • REC name

    Yorkshire & The Humber - Sheffield Research Ethics Committee

  • REC reference

    17/YH/0147

  • Date of REC Opinion

    14 Jun 2017

  • REC opinion

    Further Information Favourable Opinion