Researchers are studying the 'natural history' of centronuclear/myotubular myopathies, central core disease and multiminicore disease, with an eye to future trials
Investigators at the University of Michigan in Ann Arbor are conducting a study of the progression of centronuclear myopathies (CNMs), including the type known as myotubular myopathy (MTM); central core disease (CCD) and multiminicore disease. The study is intended to:
|James Dowling at the University of Michigan is the prinicpal investigator on the study of the progression of CNM, MTM and CCD.|
The principal investigator is James Dowling, an assistant professor in the Department of Pediatrics and Department of Neurology at the University of Michigan, where he has MDA support for laboratory research into potential therapies for MTM.
Dowling is also co-director of the MDA neuromuscular disease clinic in Ann Arbor. (The clinical progression study is not, however, sponsored by MDA.)
Participants in the progression study must:
Confidentiality will be maintained, with every participant given an identification number. No personal information will be shared with anyone outside the study team.
Contact study coordinator Kim Amburgy in Ann Arbor at (734) 647-9224 or firstname.lastname@example.org.
For more details, see Natural History of Centronuclear/Myotubular and Other RYR1-Related Myopathies. Some study-related forms are available from this website.
About Clinical Trials
A clinical trial is a test, in humans, of an experimental treatment. Although it's possible that benefit may be derived from participating in a clinical trial, it's also possible that no benefit, or even harm, may occur.