What is a Natural History Study?
Natural history studies allow scientists to collect anonymous data from patients from all over the world to gain a better understanding of GNEM. They track progression over time and identify demographic, genetic and environmental variables that correlate with a specific disease. Even if you do not want personal information used, this is an anonymous way to contribute to advancing the general understanding of GNEM.
To participate in this you will need to travel to a hospital that conducts the natural history studies. Researchers want to learn more about the causes, symptoms, and effects of GNE Myopathy. Your medical and genetic information will be collected as well as muscle tests, blood samples and other tests as needed.