An Observational Study Comparing Delandistrogene Moxeparvovec With Standard of Care in Participants With Duchenne Muscular Dystrophy

NCT ID: NCT06270719

Last Updated: 2025-12-02

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ENROLLING_BY_INVITATION

Total Enrollment

500 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-02-07

Study Completion Date

2038-12-31

Brief Summary

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This is a multicenter, prospective, observational Phase 4 study in the United States. The study is designed to collect both medical history and prospective data on Duchenne muscular dystrophy (DMD) treatment outcomes in participants receiving delandistrogene moxeparvovec as part of clinical care, compared to participants with DMD receiving or prescribed to start chronic glucocorticoid treatment at baseline in routine clinical practice.

Detailed Description

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Conditions

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Duchenne Muscular Dystrophy

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Cohort 1: Delandistrogene Moxeparvovec

Participants in Cohort 1 will have a plan for prescription of delandistrogene moxeparvovec commercially as part of clinical care prior to entry into this study.

Cohort 1a includes participants who are ambulatory and aged 4 years or greater at baseline prescribed delandistrogene moxeparvovec commercially and recruited by treating physicians before infusion is administered.

Cohort 1b includes non-ambulatory DMD participants aged 4 years or greater at baseline prescribed delandistrogene moxeparvovec commercially and recruited by treating physicians before infusion is administered.

Delandistrogene Moxeparvovec

Intervention Type GENETIC

No study medication will be provided by the sponsor during this study.

Cohort 2: Standard of Care

Cohort 2 includes ambulatory DMD participants aged 4 years or greater at baseline unexposed to DMD gene therapy and receiving standard of care therapy (chronic glucocorticoid treatment) at study entry with or without baseline use of other DMD approved therapies.

Standard of Care

Intervention Type DRUG

No study medication will be provided by the sponsor during this study.

Interventions

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Delandistrogene Moxeparvovec

No study medication will be provided by the sponsor during this study.

Intervention Type GENETIC

Standard of Care

No study medication will be provided by the sponsor during this study.

Intervention Type DRUG

Other Intervention Names

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SRP-9001 delandistrogene moxeparvovec-rokl ELEVIDYS Chronic glucocorticoid treatment

Eligibility Criteria

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Inclusion Criteria

* Has a definitive diagnosis of DMD prior to Screening based on documentation of clinical findings and confirmatory genetic testing.
* Is currently receiving or has been prescribed to start chronic glucocorticoid therapy at the time of this observational study enrollment.

A participant recruited to Cohorts 1a or 2:

* Is at least 4 years of age at the time of enrollment.
* Is ambulatory per protocol specified criteria.

A participant recruited to Cohort 1b:

\- Is non-ambulatory per protocol-specified criteria.

For Delandistrogene Moxeparvovec-treated Participants:

\- Will be initiating usual care treatment with delandistrogene moxeparvovec at the time of study enrollment.

For Comparators:

\- Is unexposed to DMD gene therapy at the time of study enrollment.

Exclusion Criteria

* Has any deletion of exon 8 and/or exon 9 in the DMD gene.
* Is currently participating in any DMD interventional study at the time of this observational study enrollment.
* Has a medical condition or confounding circumstances (for example, prior traumatic limitation for mobility or significant behavioral comorbidity) that, in the opinion of the Investigator, might compromise:

* The participant's ability to comply with the protocol-required procedures,
* The participant's wellbeing or safety, and/or
* The clinical interpretability of the data collected from the participant.
Minimum Eligible Age

4 Years

Eligible Sex

MALE

Accepts Healthy Volunteers

No

Sponsors

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Sarepta Therapeutics, Inc.

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Arkansas Children's Hospital

Little Rock, Arkansas, United States

Site Status

Children's Hospital Los Angeles - PIN

Los Angeles, California, United States

Site Status

University of Colorado - PPDS

Aurora, Colorado, United States

Site Status

Connecticut Children's Medical Center - Hartford

Hartford, Connecticut, United States

Site Status

Children's National Medical Center

Washington D.C., District of Columbia, United States

Site Status

Nicklaus Children's Hospital

Miami, Florida, United States

Site Status

Nemours Children's Hospital - Orlando

Orlando, Florida, United States

Site Status

All Children's Research Institute, Inc

St. Petersburg, Florida, United States

Site Status

Ann and Robert H Lurie Childrens Hospital of Chicago

Chicago, Illinois, United States

Site Status

Indiana Clinical and Translational Science Institute

Indianapolis, Indiana, United States

Site Status

University of Kansas Medical Center

Kansas City, Kansas, United States

Site Status

University of Michigan

Ann Arbor, Michigan, United States

Site Status

Duke Lenox Baker Children's Hospital

Durham, North Carolina, United States

Site Status

Childrens Hospital Medical Center of Akron

Akron, Ohio, United States

Site Status

OHSU Healthcare (Oregon Health and Science University)

Portland, Oregon, United States

Site Status

Penn State Health Milton S. Hershey Medical Center

Hershey, Pennsylvania, United States

Site Status

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

Site Status

Le Bonheur Children's Hospital

Memphis, Tennessee, United States

Site Status

Vanderbilt University Medical Center

Nashville, Tennessee, United States

Site Status

Cook Children's Hospital

Fort Worth, Texas, United States

Site Status

University of Virginia

Charlottesville, Virginia, United States

Site Status

Children's Hospital of the King's Daughters

Norfolk, Virginia, United States

Site Status

Seattle Children's Hospital

Seattle, Washington, United States

Site Status

The Board of Regents of the University of Wisconsin

Madison, Wisconsin, United States

Site Status

The Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Site Status

Countries

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United States

Other Identifiers

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SRP-9001-401

Identifier Type: -

Identifier Source: org_study_id

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