Research updates and clinical trials information
What About My Disease?
Readers sometimes wonder what’s happening with research for their diseases when they don’t see news about them for a while in the pages of Quest. But keep in mind: Research that seems to be for one disorder often has spillover implications for others.
Researchers at the University of Michigan are conducting an anonymous, online survey to probe patients' impressions of the impact of their neuromuscular conditions
Update May 21, 2014: According to investigator Sindhu Ramchandren, 922 people had responded to this survey as of May 19, 2014. The study was closed to new participants at 5 p.m. EDT that day. At the investigator's request, the link to the online survey has been removed. Results will be announced when they become available...
This first of a series of three stories covering the 2014 MDA Clinical Conference discusses implications of new types of genetic testing
“Knowing, if not all, is almost all,” said Matthew Harms, a neurologist and neurophysiologist from Washington University in St. Louis, in his presentation on genetic testing for neuromuscular disorders at the 2014 MDA Clinical Conference, held in Chicago March 16-19.
MDA's 2014 Clinical Conference on neuromuscular disease brings together health professionals from across the country and focuses on improving lives through excellence in care
"Optimizing Care: Improving Lives Through Clinical Excellence" is the theme of the 2014 MDA Clinical Conference, which takes place March 16-19 at the Hyatt Regency in Chicago. A secondary theme — "I am progress" — also will be in evidence, referencing the crucial role that MDA clinic team members nationwide have in providing expert medical care in neuromuscular disease and identifying new...
The National Institutes of Health is conducting a study to develop a questionnaire about motor function in young children who have a neuromuscular disorder
In its Summer 2013 round of grants, MDA awarded 31 new grants totaling $8.5 million.
Geneticist R. Rodney Howell, chairman of MDA's Board of Directors, testified before a U.S. Senate subcommittee Sept. 26 to support continued funding for newborn screening
R. Rodney Howell, a pediatrician and medical geneticist who chairs MDA's Board of Directors, advocated for passage of the Newborn Screening Saves Lives Reauthorization Act of 2013 (S. 1417) before a U.S. Senate subcommittee on Thursday, Sept. 26.
Howell emphasized that