Nationwide Children's Hospital is looking for X-Linked Myotubular Myopathy (XLMTM) and non-affected individuals to test a new video-game assessment to see if it is a good tool to measure how well they can move. Individuals able to move their arms will play special video games and to do some common tasks, like stack things, write, and pick up coins. Movement of individuals who are not able to move their arms will be recorded while they are lying on their back. These individuals do not have to do any special movements. This testing can be as short as 5 minutes or can be repeated up to three times and last 15 minutes.
In addition, another assessment that measures how well an individual can move, called the CHOP-INTEND, will be used. This assessment will take approximately 30 minutes.
If you agree to both tests, it may take up to 1 hour and will be completed at the MTM-CNM Family Conference.
If you would like to participate in these assessments, please contact Tristen Moors, from Audentes Therapeutics, for more information or to sign up for a spot (Thursday, July 23 evening and Friday/Saturday, July 24-25):
415.660.7221 or firstname.lastname@example.org.