Myotonic Dystrophy Family Registry

Part of paid clinical trials in Oakland, California.

Sponsor
Myotonic Dystrophy Foundation
Study ID
NCT02398786
Status
Recruiting
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Conditions

  • Congenital Myotonic Dystrophy
  • Dystrophia Myotonica
  • Dystrophia Myotonica 1
  • Dystrophia Myotonica 2
  • Myotonia Atrophica
  • Myotonia Dystrophica
  • Myotonic Dystrophy
  • Myotonic Dystrophy 1
  • Myotonic Dystrophy 2
  • Myotonic Dystrophy, Congenital
  • Myotonic Myopathy, Proximal
  • PROMM (Proximal Myotonic Myopathy)
  • Proximal Myotonic Myopathy
  • Steinert Disease
  • Steinert Myotonic Dystrophy
  • Steinert's Disease

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Interventions

  • Patient-entered data — OTHER
    This registry provides patient-entered data for future clinical trial and study use.

Study Details

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.

Key Dates

Start date
Feb 28, 2013
Status verified
Nov 2024
Primary completion
Feb 28, 2030
Completion
Feb 28, 2030

Study Design

Enrollment
3,500 participants (estimated)

Primary Outcome Measure

Patient reported outcomes [ Time Frame: 36 months ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Myotonic Dystrophy FoundationOaklandCalifornia94612
Sofia Olmos, PhD
[email protected]
415-800-7777

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Myotonic Dystrophy Foundation· Oakland, CA

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