RecruitingNCT06564974

Registry Study to Observe Long-term Safety of Vamorolone (AGAMREE®) in Patients With Duchenne Muscular Dystrophy-SUMMIT

Registry Study to Observe Long-term Safety of Vamorolone (AGAMREE®) in Patients With Duchenne Muscular Dystrophy [SUpplemental Patient dMd assessMents Investigating ouTcomes (SUMMIT)]


Sponsor

Catalyst Pharmaceuticals, Inc.

Enrollment

250 participants

Start Date

Sep 25, 2024

Study Type

OBSERVATIONAL

Conditions

Summary

The goal of this study is to collect additional information on the safety of long-term treatment with AGAMREE® and to explore long-term clinical impact of AGAMREE® on quality of life, as assessed by standardized patient-reported outcome measures (QoL questionnaires) in male patients aged 2 years and older with Duchenne muscular dystrophy (DMD).


Eligibility

Sex: MALEMin Age: 2 Years

Inclusion Criteria5

  • Patient or parent/legal guardian is willing and able to provide written informed consent once the nature of the registry has been explained and prior to the start of any registry-related procedures.
  • Patient and/or parent/guardian are willing and able to complete QoL questionnaires.
  • Male patients at least 2 years old.
  • Confirmed diagnosis of DMD (via genetic testing or muscle biopsy with absent dystrophin staining to anti- dystrophin antibodies 3, 1, or 2, or dystrophin immunohistochemistry or western blot).
  • Patient has a current, active prescription for, or is on, AGAMREE®.

Exclusion Criteria1

  • \. Any contraindication to AGAMREE® or medical condition, which, in the opinion of the Investigator, would affect registry participation, performance, or interpretation of registry assessments.

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Interventions

DRUGVamorolone

Study treatment is AGAMREE®, which is commercially available as an oral suspension.


Locations(27)

Phoenix Children's Hospital

Phoenix, Arizona, United States

Arkansas Childrens Hospital

Little Rock, Arkansas, United States

Children's Hospital Los Angeles

Los Angeles, California, United States

Stanford University

Palo Alto, California, United States

University of California, Davis

Sacramento, California, United States

University of Florida Clinical and Translational Science Institue

Gainesville, Florida, United States

Nicklaus Children's Hospital

Miami, Florida, United States

Nemours Children's Hospital

Orlando, Florida, United States

Johns Hopkins All Children's Hospital

St. Petersburg, Florida, United States

Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

Indiana University Health - Riley Hospital for Children

Indianapolis, Indiana, United States

University of Kansas Medical Center

Kansas City, Kansas, United States

University of Massachusetts Memorial Medical Center

North Worcester, Massachusetts, United States

Helen DeVos Children's Hospital

Grand Rapids, Michigan, United States

Atrium Health Neurosciences Institute

Charlotte, North Carolina, United States

Duke University Medical Center and Childrens Health Center

Durham, North Carolina, United States

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States

Penn State Milton S. Hershey Medical Center- Penn State Hershey Neuroscience Institute

Hershey, Pennsylvania, United States

Children's Hospital of Philadelphia (CHOP)

Philadelphia, Pennsylvania, United States

University of Texas Southwestern Medical Center

Dallas, Texas, United States

Neurology Rare Disease Center - Neurology & Neuromuscular Care Center

Denton, Texas, United States

The University of Texas Health Science Center at San Antonio

San Antonio, Texas, United States

University of Virginia Health System (UVAHS) - Pediatric Neuromuscular Center

Charlottesville, Virginia, United States

Seattle Children's Hospital

Seattle, Washington, United States

Children's Wisconsin

Milwaukee, Wisconsin, United States

San Jorge Children's Hospital

San Juan, Puerto Rico, Puerto Rico

FDI Clinical Research

San Juan, Puerto Rico, Puerto Rico

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NCT06564974


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