Status:

RECRUITING

Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

Lead Sponsor:

University of Rochester

Collaborating Sponsors:

National Institute of Neurological Disorders and Stroke (NINDS)

Conditions:

Myotonic Dystrophy

Facioscapulohumeral Muscular Dystrophy

Eligibility:

All Genders

Brief Summary

Myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) are inherited disorders characterized by progressive muscle weakness and loss of muscle tissue. The purpose of this registry i...

Detailed Description

The National Registry of DM and FSHD Patients and Family Members was developed to create a link between patients and scientists in order to promote research on these rare illnesses. The Registry is sp...

Eligibility Criteria

Inclusion

  • Inclusion Criteria:
  • Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases

Exclusion

    Key Trial Info

    Start Date :

    September 1 2000

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ESTIMATED

    End Date :

    June 1 2028

    Estimated Enrollment :

    3000 Patients enrolled

    Trial Details

    Trial ID

    NCT00082108

    Start Date

    September 1 2000

    End Date

    June 1 2028

    Last Update

    October 15 2025

    Active Locations (1)

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    Page 1 of 1 (1 locations)

    1

    University of Rochester Medical Center, Department of Neurology

    Rochester, New York, United States, 14642

    Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry | DecenTrialz