Status:

RECRUITING

Long-Term Development of Muscular Dystrophy Outcome Assessments

Lead Sponsor:

Virginia Commonwealth University

Collaborating Sponsors:

Muscular Dystrophy Association

Conditions:

LGMD1B

LGMD1C

Eligibility:

All Genders

6-50 years

Brief Summary

This is a 24-month, observational study of up to 1000 participants with Limb Girdle Muscular Dystrophy (LGMD), Myotonic Dystrophy Type 2 (DM2), and late onset Pompe disease (LOPD).

Detailed Description

Limb Girdle Muscular Dystrophy (LGMD) comprise a group of disorders made up of over 30 mutations which share a common phenotype of progressive weakness of the shoulder and hip girdle muscles. While th...

Eligibility Criteria

Inclusion

  • Age between 6-50 years at enrollment
  • Clinically affected (defined as weakness on bedside evaluation in a pattern consistent with proximal weakness)
  • Genetic confirmation of a LGMD, DM2, or LOPD
  • FVC above 30% of predicted

Exclusion

  • Any other illness that would interfere with the ability to undergo safe testing or would interfere with interpretation of the results in the opinion of the site investigator
  • Participation in a clinical trial receiving an investigational product

Key Trial Info

Start Date :

October 18 2023

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

May 1 2029

Estimated Enrollment :

1000 Patients enrolled

Trial Details

Trial ID

NCT05989620

Start Date

October 18 2023

End Date

May 1 2029

Last Update

November 18 2025

Active Locations (1)

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1

Virginia Commonwealth University

Richmond, Virginia, United States, 23298