There are a number of patient registries across the world that collect data on patients with myotonic dystrophy.
A workshop was held in 2009 to establish a core dataset that all registries should collect in order for their data to be comparable (see the links section on the left). As a result of this, an international registry that collates information from the national registries is currently in the process of being established and will go live in 2011. If you are a patient (or parent of a patient) with myotonic dystrophy and would like to register in a patient registry, you should do this via the registry in your country if one is available.
To quickly find your national registry, start typing your country name into the box below.