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Outcome measures are used in trials that evaluate the effectiveness of a medication or tests that measure changes in individuals with SMA. Unfortunately, the outcome measures currently available to us for these trials are not perfect. As such, the goal of this study is to evaluate the reliability of a test called "Electrical Impedance Myography". This test is non-invasive, pain free, and takes approximately 45 minutes.
This study, entitled "Measuring Disease Progression in Spinal Muscular Atrophy through the use of Electrical Impedance Myography" involves visits to the hospital every 6 months. However, since the testing only takes 45-60 minutes we frequently combined the testing for this study with other clinical visits or research visits.
In addition, to evaluate how helpful this testing is for individuals with SMA, we also need to learn how helpful it is for individuals without SMA in the study as well.
If you are interested in more information about any of these studies please contact Hailly Butler at 857-218-4677 pr hailly.butler@childrens.harvard.edu
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