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Icd sports registry

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Lisa Salberg Find out more about Lisa Salberg
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  • Icd sports registry

    The information below was provided by those managing the ICD Registry.
    I can tell you that I am participating in this program with my daughter, who has an ICD and is an equestrian. I would encourage any of you with ICD's who participate in athletics to talk to the organizers about participating! Lisa

    ********************

    The ICD Sports Registry is an exciting new registry, whose goal is to determine the safety of sports for individuals with implantable cardioverter-defibrillators (ICDs). Whether sports are safe for individuals with ICDs is currently unknown. Current guidelines recommend that ICD patients refrain from participation in competitive sports more vigorous than golf or bowling.

    A recent survey of heart rhythm cardiologists suggests that some individuals with ICDs, do participate in vigorous and even competitive sports, despite these guidelines. The ICD Sports Registry is currently enrolling individuals, age 10-60 years old, who have made the decision to participate in competitive sports at any level. The ICD Sports Registry does not endorse competitive sports for ICD patients. Rather, we want to obtain information to determine the safety and/or risks of sports participation by following those individuals who have made this decision and are participating in sports, over a two year period.

    A phone interview is done at the time of enrollment in the registry, and then every 6 months. The interview consists of questions regarding the individual’s medical history and details about the sports he or she is playing. The overall goal is to enroll about 400 individuals. Since the interviews are done by phone, there are no geographic limitations to participation. All information is kept strictly confidential.

    To date, we’re about half way to our goal, with 189 patients enrolled, playing sports including basketball, baseball/softball, and soccer as well as other sports. We have a large number of marathon and other runners as well as cyclists. Participating are competitive athletes in high school, college players, and many post-graduate athletes. The independent Data Safety Monitoring Board met in January and recommended continuation of the Registry.

    The Registry is made possible by support from Boston Scientific Corporation, Medtronic, and St. Jude Medical.

    Form more information, please call the ICD Sports Registry coordinating center at 1-866-207-9813 or email [email protected]. Our brochure can also be found at http://www.ncaa.org/wps/wcm/connect/...df?MOD=AJPERES
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: Icd sports registry

    Thanks for posting this Lisa.

    I just got of the phone to enroll in the study because I just received an ICD and I am starting to bike, run, and lift weights again, at low intensities of course! I have been and avid exerciser all my life and now that I have an ICD, the topic of exercise is as confusing as nuclear physics. Depending on the website and who you talk to, you can exercise, no you can't, nothing more than golf, lift weights just not sitting down, no more than 90% intensity and on and on.
    I am trying to come to grips with this disease specially since I have zero symptoms. I lost my job because of it and my way of life, and I hate this ICD!
    Sorry for the rant but I had to get it of my chest. yes i feel better.

    Comment


    • #3
      Re: Icd sports registry

      Thanks for participating!
      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

      Comment

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