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.

Myotonic Dystrophy Family Registry

Myotonic Dystrophy

Congenital Myotonic Dystrophy

Myotonic Dystrophy 1

Myotonic Dystrophy 2

Dystrophia Myotonica

Dystrophia Myotonica 1

Dystrophia Myotonica 2

Myotonia Dystrophica

Myotonic Dystrophy, Congenital

Myotonic Myopathy, Proximal

PROMM (Proximal Myotonic Myopathy)

Proximal Myotonic Myopathy

Steinert Disease

Steinert Myotonic Dystrophy

Steinert's Disease

Myotonia Atrophica

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.

Patient-entered data

Number of patients reporting specific symptoms and symptom severity, as well as impacts to quality of life and overall burden of disease in order to inform clinical trial development, understanding of disease for academic, industry and federal agency stakeholders and overall policy decisions. Results will be analyzed in comparison to other registry data and surveys to characterize this disease population cohort and to further define the population.

Myotonic Dystrophy Foundation

Myotonic Dystrophy Family Registry

About this trial

Study ID

Status

Type

Placebo

Accepting

Not accepting

Trial Timing

What is this trial about?

What are the participation requirements?