Myotonic Dystrophy Family Registry
Myotonic Dystrophy Family Registry
The Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that
 collects information on myotonic dystrophy (DM) to aid researchers in developing new,
 effective treatments and help identify participants for research studies and clinical trials.
The Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that
 collects information on myotonic dystrophy (DM) such as disease symptoms and demographic
 information to aid researchers in developing new, effective treatments and help identify
 participants for research studies and clinical trials.

 The Registry supports trials and studies, making it easier for researchers to explore data
 and identify possible trial and study participants. It is the first DM registry that gives
 community members the opportunity to explore anonymous Registry data, to see what the DM
 community looks like and what others with DM experience. It also provides information on the
 community of people living with DM, giving researchers and other medical professionals the
 opportunity to improve how they treat those affected with DM and learn more about how and why
 certain treatments work and don't work.
Inclusion Criteria:

 -  Diagnosed with congenital, juvenile-onset or adult onset DM1 or DM2 (confirmed by
 clinical exam or genetic test)

 Exclusion Criteria:

 -  Not diagnosed with DM, unaffected family members