How TBCK causes nerve and brain damage in children

Unraveling the Mechanisms of Neurodegeneration in TBCK Encephaloneuronopathy

NIH-funded research Children's Hosp of Philadelphia · NIH-11377864

This research looks at why changes in the TBCK gene lead to nerve and brain damage in some children using patient cells and lab models.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionChildren's Hosp of Philadelphia NIH-funded
Lab location1 site (Philadelphia, United States)
Project IDNIH-11377864 on NIH RePORTER

What this research studies

If my child has TBCK-related disease, the team will examine cells taken from patients and experiments in the lab to see what goes wrong at the cellular level. They will focus on how TBCK affects RNA transport to axons, local protein production near mitochondria, and mitochondrial quality control. The researchers use patient-derived fibroblasts and other models to trace the chain of events that leads to neuron loss. Their methods aim to identify molecular steps that could later be targeted by treatments.

Who could benefit from this research

Good fit: Children with confirmed TBCK mutations or families of children diagnosed with TBCK encephalopathy would be the most relevant participants or sample donors for this project.

Not a fit: People without TBCK mutations or with unrelated forms of neurodegeneration are unlikely to receive direct benefit from this specific research.

Why it matters

Potential benefit: If successful, this work could reveal why neurons die in TBCK encephalopathy and point to molecular targets for future therapies to slow or prevent neurodegeneration in affected children.

How similar studies have performed: Previous work has shown mitochondrial problems in TBCK patient cells and linked RNA transport defects to axonal health, but the precise TBCK-related mechanism remains novel and unproven.

Where this research is happening

Philadelphia, 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.
Conditions Amyotrophic Lateral Sclerosis Motor Neuron Disease
Last reviewed 2026-06-13 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.