patient registry

A privacy-protected registry and global map using geographic tagging of people with centronuclear/myotubular myopathy is being developed to speed research

posted on October 31, 2013 - 3:23pm
A patient registry and world map of people with centronuclear myopathies (CNM), including myotubular myopathy (MTM), are being developed and are seeking participation from people with these disorders or their family members.

Disease registries are seeking participants with CMD, FSHD, LGMD, MMD and Pompe disease

posted on June 7, 2013 - 11:05am
FSHD, MMD: Registry remains open The University of Rochester Medical Center in New York state would like to remind people with facioscapulohumeral muscular dystrophy (FSHD) or myotonic muscular dystrophy (MMD, or DM), and their families, about its registry to advance research in these two disorders.

Longtime MDA grantee Michio Hirano, M.D., talks about the science of treating genetic disorders of energy production

posted on October 1, 2012 - 9:25am
QUEST Vol. 19, No. 4
On a Thursday afternoon in July 2012, Michio Hirano, a professor of neurology, was in his office at Columbia University Medical Center, high above Manhattan’s upper west side.
posted on December 31, 2009 - 1:12am
QUEST Vol. 17, No. 1
Featured in this issue: Duchenne muscular dystrophy exon skipping trial ** Idebenone in DMD ** Gene injections for type 2D limb girdle muscular dystrophy **  Patient registry for LGMD2B and Miyoshi myopathy
posted on October 1, 2009 - 1:53pm
QUEST Vol. 16, No. 4
The following article contains items about: Friedreich's ataxia, Charcot-Marie-Tooth disease, myotonic muscular dystrophy type 1, amyotrophic lateral sclerosis, Emery-Dreifuss muscular dystrophy and distal muscular dystrophy (Miyoshi myopathy)
posted on July 1, 2006 - 2:45pm
QUEST Vol. 13, No. 4
Closer look questions risks of medications for people with CMT Worsening of Charcot-Marie-Tooth (CMT) disease as a result of medication use may not be as worrisome as popular belief has portrayed it, say investigators who recently culled data from medical literature and from 209 people in the CMT North American Database, an MDA-funded registry.