Clinical Trials in the UK / 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 UK 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 UK
Gene Therapy Study for Children With CLN5 Batten Disease
Active, not recruiting
Other trials for the same condition
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