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Myotonic Dystrophy Family Registry

NCT02398786 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 3500

Last updated 2024-11-21

No results posted yet for this study

Summary

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.

Conditions

  • 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

Interventions

OTHER

Patient-entered data

This registry provides patient-entered data for future clinical trial and study use.

Sponsors & Collaborators

  • Myotonic Dystrophy Foundation

    lead OTHER

Principal Investigators

  • Tanya Stevenson, EdD, MPH · Myotonic Dystrophy Foundation

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2013-02-28
Primary Completion
2030-02-28
Completion
2030-02-28

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02398786 on ClinicalTrials.gov