National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members

Purpose

The National Registry is a “match-making” service, of sorts. We collect information from people with Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy (and their unaffected family members who elect to join), and match them up with scientists who are looking for subjects to participate in research trials. People join the Registry to receive personal notification of research projects they may be eligible to participate in. Investigators, or researchers, approach the Registry for assistance recruiting people to participate in their studies. The Registry provides a solution for both parties!

Once you are enrolled, you will be informed by mail about studies for which you might be eligible. If you are interested in participating in a particular study, you simply contact the researcher listed in the study announcement. The Registry will not release your name to an investigator and you are under no obligation to volunteer for any study.

All protocols must be reviewed and approved by the Registry Scientific Advisory Committee before Registry members can be contacted with study information.

Updated 3/31/2004