Published Research from the Registry
The information collected by the National Registry is continually used by researchers and the Registry staff to explore a variety of topics and add to the growing body of knowledge on myotonic dystrophy and facioscapulohumeral muscular dystrophy. The results of their work are presented at research conferences, government sponsored health and research workshops, meetings for patient support groups, and in scientific journals.
Information presented about the Registry is further described in the categories listed below:
We invite investigators to share additional presentations and papers that reference the National Registry that we may have unintentionally neglected to include on this page. Please send us information on your research that referenced the Registry, and we will gladly include your work.
Contact Us
Registry Coordinators:
Jim Hilbert and Liz Luebbe
Toll free: (888) 925-4302
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News
New Study Pinpoints Genetic Source of Rare Form of FSHD
A Promising Step Forward Toward Myotonic Dystrophy Treatment
In Muscular Dystrophy, What Matters to Patients and Doctors Can Differ






