Investigating sirolimus to prevent epilepsy in infants with Tuberous Sclerosis Complex

Sirolimus TSC Epilepsy Prevention Study (STEPS) IND#145820 11/8/2019

['FUNDING_R01'] · CINCINNATI CHILDRENS HOSP MED CTR · NIH-10482355

This study is looking at whether giving a medication called sirolimus to infants with Tuberous Sclerosis Complex can help prevent or delay seizures, with the hope of improving their quality of life.

Quick facts

Phase['FUNDING_R01']
Study typeNih_funding
SexAll
SponsorCINCINNATI CHILDRENS HOSP MED CTR (nih funded)
Locations1 site (CINCINNATI, UNITED STATES)
Trial IDNIH-10482355 on ClinicalTrials.gov

What this research studies

This research focuses on infants diagnosed with Tuberous Sclerosis Complex (TSC), a genetic disorder that can lead to severe epilepsy and developmental issues. The study aims to determine if early treatment with sirolimus, a medication that inhibits a specific cellular pathway, can prevent or delay the onset of seizures in infants aged 0-12 months. By conducting a multicenter, randomized, double-blind, placebo-controlled clinical trial, researchers will assess both the effectiveness and safety of sirolimus in this vulnerable population. The goal is to provide a new treatment strategy that could significantly improve the quality of life for these infants.

Who could benefit from this research

Good fit: Ideal candidates for this research are infants aged 0-12 months who have been diagnosed with Tuberous Sclerosis Complex.

Not a fit: Patients who are older than 12 months or do not have a diagnosis of Tuberous Sclerosis Complex may not benefit from this research.

Why it matters

Potential benefit: If successful, this research could lead to a new preventative treatment for epilepsy in infants with TSC, potentially reducing the risk of lifelong developmental challenges.

How similar studies have performed: Previous research has shown promise in using mTORC1 inhibitors like sirolimus for treating various manifestations of TSC, indicating a potential for success in this novel application.

Where this research is happening

CINCINNATI, UNITED STATES

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.

View on NIH RePORTER →

Last reviewed 2026-05-15 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.