Myotonic Dystrophy Family Registry (MDFR)

Myotonic Dystrophy Foundation

Status

Enrolling

Conditions

Steinert's Disease

Dystrophia Myotonica 1

Myotonia Atrophica

PROMM (Proximal Myotonic Myopathy)

Myotonia Dystrophica

Dystrophia Myotonica

Myotonic Dystrophy

Myotonic Dystrophy 2

Steinert Myotonic Dystrophy

Myotonic Dystrophy 1

Congenital Myotonic Dystrophy

Dystrophia Myotonica 2

Proximal Myotonic Myopathy

Myotonic Myopathy, Proximal

Steinert Disease

Myotonic Dystrophy, Congenital

Treatments

Other: Patient-entered data

Study type

Observational

Funder types

Other

Identifiers

NCT02398786

MDF001

Details and patient eligibility

About

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.

Full description

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.

Enrollment

3,500 estimated patients

Sex

All

Volunteers

No Healthy Volunteers

Inclusion criteria