In January, MDA began funding development of the North American CMT Network to provide an infrastructure for clinical research in Charcot-Marie-Tooth disease (CMT) and aid researchers in locating potential participants for clinical studies.
An early goal of the network is to establish scoring systems for functional evaluations in children with CMT.
The network builds on the CMT North American Database, which has been collecting information from CMT-affected families since 2001 and also has received MDA support.
As the network gets under way, patients will have the opportunity to be evaluated at one of six CMT centers of excellence and have DNA samples obtained and banked. The centers, to be announced, will be in Detroit, Philadelphia, Baltimore, Dallas, Seattle and Rochester, N.Y.
Participation in the database and network is voluntary, and information that can be traced to an individual will not be released that person's written consent.