RecruitingPhase 3NCT05898620

A Novel, Regulated Gene Therapy (NGN-401) Study for Females With Rett Syndrome

A Baseline-Controlled, Open-Label, Multicenter, Single-Arm, Pivotal Study to Evaluate the Efficacy, Safety, and Tolerability of NGN-401 in Subjects With Rett Syndrome (Embolden)


Sponsor

Neurogene Inc.

Enrollment

33 participants

Start Date

Jun 13, 2023

Study Type

INTERVENTIONAL

Conditions

Summary

This study will evaluate the efficacy and safety profiles of the investigational gene therapy, NGN-401, in females with typical Rett syndrome.


Eligibility

Sex: FEMALEMin Age: 3 Years

Inclusion Criteria6

  • Females who are between the ages of ≥4 and ≤10 years for Arms 1 and 2 (Arms closed). Females who are ≥11 years of age or older for Arm 3 (Arm closed). Females who are ≥3 for Arm 4, the pivotal cohort.
  • Diagnosis of typical Rett syndrome with a documented disease-causing mutation in the methyl-CpG-binding protein 2 (MECP2) gene
  • Current anti-epileptic drug regimen has been stable for at least 12 weeks
  • Participant must be in the post-regression stage
  • Participant and caregiver should reside within a 2-hour drive of the study center for at least 3 months following treatment
  • Participant must have never taken trofinetide or have taken trofinetide and discontinued due to tolerability, lack of efficacy, or other reasons. Following NGN-401 dosing, trofinetide may be initiated after a specified time period and with the support of the treating clinician.

Exclusion Criteria3

  • Normal or near normal hand function
  • Has a current clinically significant condition other than Rett syndrome
  • Presence of a concomitant medical condition that precludes intracerebroventricular administration, or use of anesthetics or immune suppression needed for study related procedures

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Interventions

GENETICNGN-401

NGN-401 is a non-replicating, recombinant AAV9 carrying a full length human MECP2 transgene.


Locations(16)

University of Alabama at Birmingham

Birmingham, Alabama, United States

UCSF Benioff Children's Hospital Oakland

Oakland, California, United States

Children's Hospital Colorado

Aurora, Colorado, United States

Nicklaus Children's Hospital Research Institute

Miami, Florida, United States

Rush University Medical Center

Chicago, Illinois, United States

Kennedy Krieger Institute

Baltimore, Maryland, United States

Boston Children's Hospital

Boston, Massachusetts, United States

Montefiore Medical Center

New York, New York, United States

UNC at Chapel Hill

Chapel Hill, North Carolina, United States

Nationwide Children's Hospital

Columbus, Ohio, United States

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

Vanderbilt University Medical Center

Nashville, Tennessee, United States

Texas Children's Hospital

Houston, Texas, United States

The Children's Hospital at Westmead

Sydney, New South Wales, Australia

Royal Hospital for Children and Young People

Edinburgh, United Kingdom

Manchester University NHS Foundation Trust

Manchester, United Kingdom

View Full Details on ClinicalTrials.gov

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NCT05898620


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