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ACTIVE NOT RECRUITING
NCT04042025
PHASE3

Long-term Follow-up Study of Patients Receiving Onasemnogene Abeparvovec-xioi

Sponsor: Novartis Gene Therapies

View on ClinicalTrials.gov

Summary

This is a long-term follow-up safety and efficacy study of participants in clinical trials for spinal muscular atrophy (SMA) who were treated with onasemnogene abeparvovec-xioi. Participants will roll over from their respective previous (parent) study into this long-term study for continuous monitoring of safety as well as monitoring of continued efficacy and durability of response to onasemnogene abeparvovec-xioi treatment.

Official title: A Long-term Follow-up Study of Patients in the Clinical Trials for Spinal Muscular Atrophy Receiving AVXS-101

Key Details

Gender

All

Age Range

Any - Any

Study Type

INTERVENTIONAL

Enrollment

85

Start Date

2020-02-10

Completion Date

2035-12-31

Last Updated

2025-04-25

Healthy Volunteers

No

Interventions

BIOLOGICAL

Onasemnogene Abeparvovec-xioi

Onasemnogene abeparvovec-xioi is a non-replicating recombinant adeno-associated virus serotype 9 containing the human survival motor neuron gene under the control of the cytomegalovirus enhancer/chicken β-actin-hybrid promoter. Onasemnogene abeparvovec-xioi administered as a one-time intravenous (IV) infusion or intrathecal (IT) injection. Dosage determined by participant weight.

Locations (31)

Stanford University Medical Center

Palo Alto, California, United States

Children's Hospital Colorado

Aurora, Colorado, United States

Ann Robert H. Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

John Hopkins Hospital - David M. Rubenstein Child Health Building

Baltimore, Maryland, United States

Massachusetts General Hospital

Boston, Massachusetts, United States

Boston Children's Hospital

Boston, Massachusetts, United States

Spectrum Health Hospitals Helen DeVos Children's Hospital

Grand Rapids, Michigan, United States

Washington Unviersity School of Medicine in Saint Louis

St Louis, Missouri, United States

Columbia University Medical Center

New York, New York, United States

Duke University

Durham, North Carolina, United States

Nationwide Children's Hospital

Columbus, Ohio, United States

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

Clinic for Special Children

Strasburg, Pennsylvania, United States

Children's Health Specialty Center Dallas Campus

Dallas, Texas, United States

University of Utah Health

Salt Lake City, Utah, United States

Children's Hospital of The King's Daughters

Norfolk, Virginia, United States

Virginia Commonwealth University

Richmond, Virginia, United States

University of Wisconsin, Madison

Madison, Wisconsin, United States

Sydney Children's Hospital

Randwick, New South Wales, Australia

Universitair Ziekenhuis Gent

Ghent, Belgium

Centre de Référence des Maladies Neuromusculaires

Liège, Belgium

Children's Hospital of Eastern Ontario Research Institute

Ottawa, Ontario, Canada

Hôpital Armand Trousseau

Paris, France

Instituto Gianninia Gaslini

Genova, Italy

Universita Degli Studi Di Milano

Milan, Italy

Istituto Neurologico di Ricerca

Milan, Italy

Fondazione Policlinico Universitario Agostino Gemelli

Roma, Italy

Tokyo Women's Medical University Hospital

Tokyo, Japan

National Taiwan University Hospital

Taipei, Taiwan

Great Ormond Street Hospital for Children NHS Foundation Trust

London, United Kingdom

The Newcastle Upon Tyne Hospitals NHS Foundation Trust

Newcastle upon Tyne, United Kingdom