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Active, not recruiting Phase 3

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

NCT05898620 · tracked via the Priya Life Science UK tracker
Sponsor
Neurogene Inc
Phase
Phase 3
Started
2023-06-13
Last updated
2026-06-10

Condition(s) studied

Rett Syndrome

Investigational drug(s) / intervention(s)

NGN-401

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

Study 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
FEMALE
Min age
3 Years
Max age
—
Healthy volunteers
No
Inclusion Criteria: * 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 Criteria: * 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 Other inclusion and exclusion criteria apply.

Primary outcome measure(s)

  • Efficacy of NGN-401 — 52 Weeks
    Responders will be defined as participants who: * Attain a CGI-I score of ≤ 3 ("minimally improved"); * and gain any one developmental milestone/skill from a list of 28, as captured through standardized video recordings and independently verified by blinded central raters.

Trial sites (16)

FacilityCityRegionStatus
University of Alabama at Birmingham Birmingham Alabama
UCSF Benioff Children's Hospital Oakland Oakland California
Children's Hospital Colorado Aurora Colorado
Nicklaus Children's Hospital Research Institute Miami Florida
Rush University Medical Center Chicago Illinois
Kennedy Krieger Institute Baltimore Maryland
Boston Children's Hospital Boston Massachusetts
Montefiore Medical Center New York New York
UNC at Chapel Hill Chapel Hill North Carolina
Nationwide Children's Hospital Columbus Ohio
Children's Hospital of Philadelphia Philadelphia Pennsylvania
Vanderbilt University Medical Center Nashville Tennessee
Texas Children's Hospital Houston Texas
The Children's Hospital at Westmead Sydney New South Wales
Royal Hospital for Children and Young People Edinburgh United Kingdom
Manchester University NHS Foundation Trust Manchester United Kingdom

More Neurogene Inc. trials in the UK

Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT05898620 on ClinicalTrials.gov ↗ ← All trials in the UK