Congenital Muscular Dystrophy, Congenital Myopathy and Congenital Myasthenic Syndrome
The Congenital Muscle Disease International Registry (CMDIR) was created in 2009 to identify the global congenital muscle disease population. You do not have to be diagnosed with a specific muscle disorder to register. The registry provides information on where you can get genetic testing, the names of medical specialists, and community support groups.
The Global Registry for COL6-related dystrophies
A disease group specific registry is available which collects data from patients with Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy (UCMD) or an intermediate form of these conditions. The registry is managed from Newcastle University UK and the registry website can be found at www.collagen6.org. Clinicians and patients are both welcome to participate in the registry. Registry documents are available in a number of language translations.