Preventing Epilepsy in Infants with Tuberous Sclerosis Complex

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

NIH-funded research Cincinnati Childrens Hosp Med Ctr · NIH-10656395

This project gives a medication called sirolimus to infants with Tuberous Sclerosis Complex to see if it can stop or delay seizures and improve their development.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionCincinnati Childrens Hosp Med Ctr NIH-funded
Lab location1 site (Cincinnati, United States)
Project IDNIH-10656395 on NIH RePORTER

What this research studies

Tuberous Sclerosis Complex (TSC) often causes severe epilepsy that is hard to treat and can lead to lifelong learning difficulties. We know that a medication called sirolimus has helped some people with TSC, but it might work even better if given very early. This project is a clinical trial where we will give sirolimus or a placebo to infants with TSC, aged 0-12 months, before they start having seizures. We want to find out if this early treatment can prevent or delay seizures and help with their brain development. We will also carefully check if the medication is safe for these young children.

Who could benefit from this research

Good fit: Ideal candidates are infants aged 0-12 months who have been diagnosed with Tuberous Sclerosis Complex but have not yet experienced seizures.

Not a fit: Patients who have already developed epilepsy or are older than 12 months may not be eligible for this specific early intervention approach.

Why it matters

Potential benefit: If successful, this medication could prevent or significantly delay the onset of epilepsy and improve brain development in infants with Tuberous Sclerosis Complex.

How similar studies have performed: Previous studies in mouse models and human trials suggest that early treatment with similar medications might be more effective against epilepsy and developmental issues in TSC.

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.
Last reviewed 2026-06-15 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.