Rare NMD registries

Inventory of patient registries on rare inherited muscular disorders (what is already out there?)

This inventory lists the currently available patient registries for congenital muscular dystrophies and myopathies, limb girdle muscular dystrophies and myofibrillar myopathies, myotonic dystrophies and facio-scapulo-humeral muscular dystrophy and where they are located. It can be downloaded from the downloads section on the left. The inventory will be regularly updated as new information becomes available. If you have any information about other registries or wish to update this file, please contact Anna Sarkozy.

157th ENMC International Workshop on "Patient registries for rare inherited muscular disorders" (summary)

At the end of January 2008, the European Neuromuscular Centre (ENMC), in collaboration with TREAT-NMD partners, hosted a group of experts in Naarden, the Netherlands, for a discussion on patient registries for rare inherited muscular disorders. A short summary of the results of this meeting is available in the downloads section on the left. A full report was published in the journal Neuromuscular Disorders in 2008.