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Research
1/8/2016
Friday, January 8, 2016
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Section: Research




Dear HCMA Members and Supporters:
 
We are writing to let you know about an exciting new study called Lifestyle and Exercise in Hypertrophic Cardiomyopathy, "Live HCM"whose goal is to determine how lifestyle and exercise impact the well-being of individuals with HCM. This study is funded by the National Institutes of Health.
Currently, it is recommended that individuals with HCM avoid most vigorous sports, based on possible links between vigorous competitive sports and sudden cardiac arrest. However, the risks and benefits of mild, moderate, or vigorous exercise for HCM patients remain unknown.  LIVE-HCM  is looking to obtain information on how exercise and other lifestyle choices affect the well-being of people living with HCM  throughout the lifespan, from children to adults.   We're enclosing a brochure with more information about  LIVE-HCM.

LIVE-HCM is currently enrolling individuals, age 8 to 50 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 HCM.
 
For more information, please call the  LIVE-HCM coordinating center at 866-207-9813 or email us at live.hcm@yale.edu or look for us on the web at www.livehcm.org.
 
Sincerely,
Lisa Salberg - HCMA Founder/CEO and Co-Principle Investigator -LIVE-HCM
Rachel Lampert, MD - Yale Co-Principle Investigators LIVE-HCM
Michael Ackerman MD, Mayo Clinic Co-Principle Investigators LIVE-HCM
Sharlene Day MD, University of Michigan- Co-Principle Investigators LIVE-HCM
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Comments (15)
Harry Gregory
11/23/2016 6:04:10 PM
Recently diagnosed,
I guess I have HCM, I guess I am in a bit of denial as well.... I considered myself to be a fairly competitive
athlete and also wonder about more
concrete guidelines for exercise. I have
been told to exercise but my heart rate should not get higher than 130/min.... I'd be willing to participate but the age limit of 50 is much to young!


Kristin
11/16/2016 8:08:18 PM
I have HCM...SCA happened on Oct 17, 2014 and then ICD. Was a competitive athlete & now just "work out". I wish there were more concrete guidelines for exercise. I would be willing to participate in your study


Kristin
11/16/2016 8:03:12 PM
I have HCM...SCD happened on Oct 17, 2014 and then ICD. I wish there were more concrete guidelines for exercise. I would be willing to participate in your study


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