Investigators conducting an online survey to gather information from people with inclusion-body myositis report early results and ask a few more questions
Investigators conducting an online survey launched in January 2013 to gather anonymous information from people with inclusion-body myositis (IBM) are now reporting preliminary results and are asking the original respondents to complete a short supplementary survey.
A study to determine the natural history and outcome measures for clinical trials in Becker MD and sporadic (nongenetic) inclusion-body myositis is open in Ohio
A study to determine the best outcome measures — ways to evaluate the effects of a treatment — for use in clinical studies in Becker muscular dystrophy (BMD) and sporadic (nongenetic) inclusion-body myositis (sIBM) is underway at Nationwide Children's Hospital in Columbus, Ohio, under the supervision of neurologist Jerry Mendell working with physical therapists Linda Lowes and
Early data show follistatin gene transfer may be safe and effective in BMD and safe in IBM, in which efficacy has not yet been evaluated
Preliminary results from a trial to test the safety of injecting follistatin genes into the thigh muscles of adults with Becker muscular dystrophy (BMD)or sporadic (nongenetic) inclusion-body myositis (sIBM) suggest that the experimental therapeutic approach is safe in both types of patients
An experimental myostatin-blocking drug for sporadic inclusion-body myositis will get special attention from the U.S. Food and Drug Administration
Update (July 16, 2014): Some people have reported difficulty getting information about this trial when contacting the trial sites or Novartis. MDA is looking into these matters.
Researchers are conducting an online survey of people with inclusion-body myositis that they hope will lead to an ongoing IBM registry
A survey of people with inclusion-body myositis (IBM) is being conducted by A. David Paltiel, a professor of public health (health policy) and management at Yale University, with colleagues there and at the Myositis Association.
The American Academy of Neurology has released guidelines for the use of intravenous immunoglobulin, which modulates the immune system in MG, LEMS and myositis
The American Academy of Neurology (AAN) has released new guidelines on the use of a treatment called intravenous immunoglobulins (IVIG) in various neuromuscular disorders.
In this first of several reports on MDA's Clinical Conference, the role of genetics and immunology in different neuromuscular diseases is described
More than 500 physicians, allied health care professionals and MDA staff attended the MDA's 2012 Clinical Conference in Las Vegas, March 4-7.
The program emphasized: