Endocrine Myopathies

Disease registry seeks input from people with congenital muscular dystrophies, congenital myasthenic syndromes or other congenital muscle disorders, including those with no clear diagnosis

posted on March 12, 2013 - 12:41pm
An international patient registry (database) is gathering information about children and adults with any form of congenital muscular dystrophy (CMD), a congenital myasthenic syndrome or a congenital myopathy (congenital muscle disease), with the goals of promoting research and improving care in these disorders.

A new study seeks to investigate the possible relationship between religion/spirituality and disability acceptance

posted on November 10, 2010 - 5:01pm
With approximately 54 million Americans living with disabilities, exploring and understanding factors that might facilitate or hinder acceptance of one’s disability may be an important area of research. But what exactly is the relationship between religious/spiritual attitudes and acceptance or lack of acceptance of disability for people with neuromuscular disorders?

Researchers seek adults with nonspecific diagnoses of muscular dystrophy or myopathy, who might have late-onset Pompe disease

posted on August 27, 2010 - 2:30pm
A study to determine the early features of late-onset Pompe disease (acid maltase deficiency) is seeking 250 adults who have a clinical diagnosis of unclassified limb-girdle muscular dystrophy (LGMD), an uncertain diagnosis of other forms of muscular dystrophy (MD),or an unclassified myopathy(muscle disease)who do not carry any biochemical, metabolic, enzymatic, serologic (blood), molecular or...
posted on April 1, 2009 - 2:00pm
QUEST Vol. 16, No. 2
Q: What is exercise? Why do it?

Can an immune response be rerouted to treat disease?

posted on July 1, 2008 - 1:00pm
QUEST Vol. 15, No. 4
What do inflammatory muscle diseases (myositis), myasthenia gravis, Lambert-Eaton syndrome, and dozens of other disorders like lupus and rheumatoid arthritis, have in common?