Clinical Trials in the USA / NCT05898620
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 USA tracker
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
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)
| Facility | City | Region | Status |
|---|---|---|---|
| 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 USA
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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 USA