NCT05967351

Brief Summary

The purpose of this study is to provide a single clinical study with a uniform approach to monitoring long-term safety and efficacy in participants who received delandistrogene moxeparvovec in a previous clinical study. No study drug will be administered as part of this study.

Trial Health

82
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
400

participants targeted

Target at P50-P75 for phase_3

Timeline
91mo left

Started Sep 2023

Longer than P75 for phase_3

Geographic Reach
9 countries

38 active sites

Status
enrolling by invitation

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress26%
Sep 2023Oct 2033

First Submitted

Initial submission to the registry

July 21, 2023

Completed
11 days until next milestone

First Posted

Study publicly available on registry

August 1, 2023

Completed
2 months until next milestone

Study Start

First participant enrolled

September 27, 2023

Completed
10.1 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

October 31, 2033

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

October 31, 2033

Last Updated

February 6, 2026

Status Verified

February 1, 2026

Enrollment Period

10.1 years

First QC Date

July 21, 2023

Last Update Submit

February 4, 2026

Conditions

Keywords

Duchenne Muscular DystrophyDMDPediatricLong-termFollow-upSafetyEfficacy

Outcome Measures

Primary Outcomes (1)

  • Number of Participants with a Treatment-emergent Adverse Event (TEAE), Serious Adverse Event (SAE), and Adverse Event of Special Interest (AESI)

    Up to 10 years

Secondary Outcomes (9)

  • Change in the North Star Ambulatory Assessment (NSAA) Total Score From Pre-infusion Baseline of Delandistrogene Moxeparvovec to the End of the Study Participation

    Baseline, up to 10 years

  • Change in Time to Rise From Floor From Pre-infusion Baseline of Delandistrogene Moxeparvovec to the End of the Study Participation

    Baseline, up to 10 years

  • Change in the Time of 10-meter Walk/Run (10MWR) From Pre-infusion Baseline of Delandistrogene Moxeparvovec to the End of the Study Participation

    Baseline, up to 10 years

  • Change in Performance of Upper Limb (PUL) (Version 2.0) Total Scores From Pre-infusion Baseline of Delandistrogene Moxeparvovec to the End of the Study Participation

    Baseline, up to 10 years

  • Change in PUL (Version 2.0) Domain Specific Scores From Pre-infusion Baseline of Delandistrogene Moxeparvovec to the End of the Study Participation

    Baseline, up to 10 years

  • +4 more secondary outcomes

Study Arms (1)

Delandistrogene Moxeparvovec

EXPERIMENTAL

Participants received delandistrogene moxeparvovec in a previous clinical study.

Genetic: delandistrogene moxeparvovec

Interventions

No study drug will be administered as part of this study. Eligible participants who received treatment with delandistrogene moxeparvovec during a previous clinical study will be included.

Also known as: SRP-9001, delandistrogene moxeparvovec-rokl, ELEVIDYS
Delandistrogene Moxeparvovec

Eligibility Criteria

Sexmale
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Received delandistrogene moxeparvovec for Duchenne muscular dystrophy in a previous clinical study.
  • Has (a) parent(s) or legal caregiver(s) or is ≥18 years of age and able to understand and comply with the study visit schedule and all other protocol requirements.

You may not qualify if:

  • Not applicable

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (38)

Arkansas Children's Hospital

Little Rock, Arkansas, 72202, United States

Location

UCLA Medical Center

Los Angeles, California, 90095, United States

Location

Lucile Packard Children's Hospital Stanford (LPCH)

Palo Alto, California, 94304, United States

Location

University of California, Davis

Sacramento, California, 95817, United States

Location

Rady Children's Hospital

San Diego, California, 92123, United States

Location

Children's Hospital of Colorado

Aurora, Colorado, 80045-7106, United States

Location

University of Florida Clinical Research Center

Gainesville, Florida, 32610, United States

Location

Ann & Robert H. Lurie Children's Hospital of Chicago

Chicago, Illinois, 60611, United States

Location

University of Iowa ICTS Clinical Research Unit

Iowa City, Iowa, 52242, United States

Location

The Johns Hopkins Hospital, Rubenstein Child Health Bldg

Baltimore, Maryland, 21287, United States

Location

Boston Children's Hospital

Boston, Massachusetts, 02115, United States

Location

Washington University School of Medicine

St Louis, Missouri, 63110, United States

Location

Columbia University Pediatric Neuromuscular Center

New York, New York, 10032, United States

Location

University of Rochester Medical Center

Rochester, New York, 14642, United States

Location

Lenox Baker Children's Hospital (Duke University)

Durham, North Carolina, 27705, United States

Location

Nationwide Children's Hospital

Columbus, Ohio, 43205, United States

Location

Oregon Health and Science University

Portland, Oregon, 97239, United States

Location

Chiildren's Hospital of Philadelphia

Philadelphia, Pennsylvania, 19104, United States

Location

Children's Health Specialty Center

Dallas, Texas, 75207, United States

Location

University of Utah Health

Salt Lake City, Utah, 84132, United States

Location

Children's Hospital of The King's Daughters

Norfolk, Virginia, 23510, United States

Location

Children's Hospital Wisconsin

Milwaukee, Wisconsin, 53226, United States

Location

Universitair Ziekenhuis Gent, Neuromuscular Reference Centre (NMRC)

Ghent, East Flanders, 9000, Belgium

Location

Universitätsklinikum Essen - Klinik für Kinderheilkunde I

Essen, North Rhine-Westphalia, 45147, Germany

Location

Hong Kong Children's Hospital

Hong Kong, Hong Kong

Location

UOC Neurologia Pediatrica e Malattie Muscolari, Istituto G. Gaslini, Istituto Pediatrico di Ricovero e Cura a Carattere Scientifico

Genova, 16147, Italy

Location

UOC Neurologia, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico

Milan, 20122, Italy

Location

UOC Neuropsichiatria Infantile, Area Salute del Bambino, Fondazione Policlinico Universitario A. Gemelli IRCCS, Universita Cattoclica del Sacro Cuore

Roma, 00168, Italy

Location

Kobe University Hospital

Kobe, Hyōgo, 650-0017, Japan

Location

National Center of Neurology and Psychiatry

Kodaira, Tokyo, 187-8551, Japan

Location

Tokyo Women's Medical University Hospital

Tokyo, 1628666, Japan

Location

Hospital Sant Joan de Deu

Esplugues de Llobregat, Barcelona, 08950, Spain

Location

Hospital Universitario y Politecnico La fe. Neurology Department

Valencia, 46026, Spain

Location

Kaohsiung Medical University Chung-Ho Memorial Hospital

Kaohsiung City, 807, Taiwan

Location

National Taiwan University Hospital

Taipei, 100225, Taiwan

Location

Great Ormond Street Hospital For Children NHS Foundation Trust

London, Greater London, WC1N 1EJ, United Kingdom

Location

Oxford University Hospitals NHS Foundation Trust

Oxford, Oxfordshire, OX3 9DU, United Kingdom

Location

Institute of Translational and Clinical Research

Newcastle upon Tyne, NE1 3BZ, United Kingdom

Location

MeSH Terms

Conditions

Muscular Dystrophy, Duchenne

Condition Hierarchy (Ancestors)

Muscular DystrophiesMuscular Disorders, AtrophicMuscular DiseasesMusculoskeletal DiseasesNeuromuscular DiseasesNervous System DiseasesGenetic Diseases, X-LinkedGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Design

Study Type
interventional
Phase
phase 3
Allocation
NA
Masking
NONE
Purpose
OTHER
Intervention Model
SINGLE GROUP
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

July 21, 2023

First Posted

August 1, 2023

Study Start

September 27, 2023

Primary Completion (Estimated)

October 31, 2033

Study Completion (Estimated)

October 31, 2033

Last Updated

February 6, 2026

Record last verified: 2026-02

Locations