Targeting mTOR for KPTN-related enlarged brain and seizures

KPTN Loss and Megalencephaly: mTOR Activation as Therapeutic Target

['FUNDING_R37'] · UNIVERSITY OF MARYLAND BALTIMORE · NIH-11417029

Trying mTOR-blocking approaches for people with KPTN-related enlarged heads, developmental delay, autism, and hard-to-control seizures.

Quick facts

Phase['FUNDING_R37']
Study typeNih_funding
SexAll
SponsorUNIVERSITY OF MARYLAND BALTIMORE (nih funded)
Locations1 site (BALTIMORE, UNITED STATES)
Trial IDNIH-11417029 on ClinicalTrials.gov

What this research studies

This project focuses on people with KPTN gene loss that causes enlarged head growth (megalencephaly), developmental delays, autism, and seizures that are often hard to treat. Researchers will study patient data and laboratory models to understand how loss of KPTN turns on the mTOR growth pathway. They will test whether drugs that block mTOR can reverse the molecular and structural brain changes seen with KPTN loss. The work may include genetic testing, head-size tracking, analysis of patient samples, and lab drug testing to connect bench findings to patient symptoms.

Who could benefit from this research

Good fit: People of any age with confirmed pathogenic KPTN (kaptin) loss-of-function variants and clinical features such as megalencephaly and refractory seizures would be the best candidates.

Not a fit: People without KPTN mutations or whose condition is not driven by mTOR activation are unlikely to benefit from mTOR-targeted approaches in this project.

Why it matters

Potential benefit: If successful, this work could point to treatments that reduce brain overgrowth and help control seizures and developmental problems in people with KPTN-related disease.

How similar studies have performed: Drugs that block mTOR have shown benefit in other mTOR-related disorders (for example tuberous sclerosis), but applying these approaches specifically to KPTN-related megalencephaly is a newer, less-tested area.

Where this research is happening

BALTIMORE, 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.