Lifestyle and Exercise in Long QT Syndrome “LIVE LQTS” and Lifestyle and Exercise in Hypertrophic Cardiomyopathy (HCM) "LIVE HCM" is an exciting new study whose goal is to determine how lifestyle and exercise impact the well-being of individuals with LQTS and HCM. This study is funded by the National Institutes of Health.

Currently, it is recommended that many individuals with LQTS and HCM avoid most vigorous sports, based on possible links between vigorous competitive sports and sudden cardiac arrest for some people with LQT/HCM. However, the risks and benefits of mild, moderate, or vigorous exercise for LQTS and HCM patients remain unknown. LIVE-LQTS/LIVE-HCM is looking to obtain information on how exercise and other lifestyle choices affect the well-being of people living with LQTS and HCM throughout the lifespan, from children to adults.

LIVE- LQTS/LIVE-HCM is currently enrolling individuals, age 8 to 60 years old, both exercisers and non-exercisers. People with or without an ICD can participate. Participation involves a telephone interview and filling out questionnaires online or on the phone. Since all information is gathered by phone, fax, and/or internet, there are no geographic limitations to participation. It’s a three year study, with another brief questionnaire every six months. Participants also receive a Fitbit-type pedometer, to wear a few weeks per year, which is yours to keep.  All information is kept strictly confidential. You can be participating in other studies and also participate in this one.

Whether you like to run, walk, play baseball, or sit and read a book, you can participate in this study and help us learn more about lifestyle choices and LQTS or HCM.

For more information, please call the LIVE-LQTS/LIVE-HCM coordinating center at 866-207-9813, live.lqts@yale.edu or www.liveqts.org. 

LIVE-LQTS/LIVE-HCM is in the final push for enrollment; approximately 500 participants with LQTS and HCM are still needed for the study.