Multiple registries, one goal.
Registries are an important way to count and identify families with a specific health condition. It includes gathering current contact information and in some cases, health information. The information is collected, stored and shared in a way that respects people’s privacy. Registries are a key part of a structure that supports researchers, doctors and pharmaceutical companies to work towards future treatments. The registries below will help get a better estimate of the individuals living with MTM-CNM. In addition, it allows researchers to better understand this disorder and locate patients for clinical trials. Some registries are actively involved with MTM-CNM research going on right now. This is why they are so important!
The Myotubular-Centronuclear Myopathy (MTM-CNM) community is lucky to have not only one, but three patient registries! Why so many registries? Because there are multiple groups who want to make a difference for people who have MTM-CNM. There are multiple registries but one goal: an ultimate treatment for MTM-CNM.
We encourage every affected individual with MTM-CNM to register in at least one, and ideally all 3 registries. All registrants are welcome, regardless of your participation elsewhere. These registries invite all those affected by MTM-CNM, female carriers and deceased loved ones as well.