How NEK1 gene changes affect ALS and related dementia

Investigating the Contribution of ALS/FTD-Associated Mutations in the NEK1 Kinase to Disease Pathophysiology

NIH-funded research Northwestern University · NIH-11317216

Researchers are looking at how changes in the NEK1 gene damage motor neurons in people with ALS and ALS-linked frontotemporal dementia.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionNorthwestern University NIH-funded
Lab location1 site (Chicago, United States)
Project IDNIH-11317216 on NIH RePORTER

What this research studies

This project uses cells made from patient stem cells, fruit fly models, engineered cell systems, and brain/spinal cord tissue from people who had ALS to find how NEK1 mutations harm motor neurons. Scientists will compare NEK1 mutant and normal cells to identify biochemical changes, including which proteins NEK1 modifies. They will link those molecular changes to neuron function and behavior in animal models and examine postmortem patient tissue for the same signatures. The combined approach aims to connect genetic changes with the cell and tissue changes seen in ALS/FTD.

Who could benefit from this research

Good fit: People with ALS or ALS/FTD, especially those known to carry NEK1 mutations or willing to donate tissue or cells for research, would be ideal contributors.

Not a fit: Patients without NEK1-related disease or those seeking immediate clinical treatment are unlikely to get direct personal benefit from this basic research.

Why it matters

Potential benefit: If successful, the work could reveal targets for new treatments or biomarkers that help diagnose or slow ALS/FTD caused by NEK1 changes.

How similar studies have performed: Previous genetic and cellular studies have linked NEK1 loss-of-function to increased ALS risk, but detailed mechanisms in human-derived neurons remain relatively untested and are the focus here.

Where this research is happening

Chicago, 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.