Actively Recruiting

Phase 2
Age: 1Day - 6Months
All Genders
NCT05104983

Stopping TSC Onset and Progression 2B: Sirolimus TSC Epilepsy Prevention Study

Led by Darcy Krueger · Updated on 2026-01-22

64

Participants Needed

11

Research Sites

298 weeks

Total Duration

On this page

AI-Summary

What this Trial Is About

This trial is a Phase II randomized, double-blind, placebo controlled multi-site study to evaluate the safety and efficacy of early sirolimus to prevent or delay seizure onset in TSC infants. This study is supported by research funding from the Office of Orphan Products Division (OOPD) of the US Food and Drug Administration (FDA).

CONDITIONS

Official Title

Stopping TSC Onset and Progression 2B: Sirolimus TSC Epilepsy Prevention Study

Who Can Participate

Age: 1Day - 6Months
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Baby is younger than 7 months old at the time of treatment start
  • Corrected age is at least 39 weeks
  • Confirmed diagnosis of Tuberous Sclerosis Complex (TSC) by clinical or genetic criteria
Not Eligible

You will not qualify if you...

  • Baby has had seizures or shows seizure activity on baseline EEG
  • Baby has used or is using anti-seizure medications, systemic mTOR inhibitors, ketogenic diet, or other anti-seizure treatments
  • Baby has participated in another investigational drug study within 30 days before screening
  • Baby has a significant illness or active infection at screening
  • History of severe prematurity (born before 30 weeks gestation) or serious medical problems at birth or neonatal period unrelated to TSC
  • Abnormal kidney, liver, or bone marrow labs that pose safety risks
  • Neurosurgery planned or done within 3 months before baseline
  • Baby has TSC-related conditions needing mTOR treatment like SEGA or AML
  • Investigator believes baby cannot comply with study requirements

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 11 locations

1

University of Alabama at Birmingham

Birmingham, Alabama, United States, 35294

Actively Recruiting

2

University of California at Los Angeles

Los Angeles, California, United States, 90095

Actively Recruiting

3

Stanford University

Palo Alto, California, United States, 94304

Actively Recruiting

4

Children's Hospital Colorado

Aurora, Colorado, United States, 80045

Actively Recruiting

5

Lurie Children's Hospital of Chicago

Chicago, Illinois, United States, 60611

Actively Recruiting

6

Boston Children's Hospital

Boston, Massachusetts, United States, 02115

Actively Recruiting

7

Washington University -- St. Louis

St Louis, Missouri, United States, 63110

Actively Recruiting

8

University of North Carolina at Chapel Hill

Chapel Hill, North Carolina, United States, 27510

Active, Not Recruiting

9

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States, 45229

Actively Recruiting

10

University of Texas HSC at Houston

Houston, Texas, United States, 77030

Actively Recruiting

11

Seattle Children's Hospital

Seattle, Washington, United States, 98105

Actively Recruiting

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Research Team

M

Molly S Griffith, BA

CONTACT

J

Jessica Krefting, RN

CONTACT

How is the study designed?

Study Type

INTERVENTIONAL

Masking

TRIPLE

Allocation

RANDOMIZED

Model

PARALLEL

Primary Purpose

PREVENTION

Number of Arms

2

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Stopping TSC Onset and Progression 2B: Sirolimus TSC Epilepsy Prevention Study | DecenTrialz