Recently, several new registries for individuals with various forms of congenital muscle disease have been started. These registries create databases in order to improve awareness, research effectiveness, and communication. Participation is voluntary and confidentiality will be protected.

Congenital Muscle Disease Registries

Have you participated in a registry and/or research? Why or why not?


Jori Reijonen, Ph.D.
Neuromuscular Diseases