Understanding how gene changes affect ALS and FTD in people with the C9orf72 gene

Epigenetic Mechanisms Contributing to the Pathogenesis of ALS/FTD with GGGGCC Repeat Expansion Mutation at the C9orf72 Locus

NIH-funded research Columbia University Health Sciences · NIH-11099959

This research explores how changes in gene activity, called epigenetics, might influence when and how severe ALS and FTD become in individuals who carry a specific genetic change in the C9orf72 gene.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionColumbia University Health Sciences NIH-funded
Lab location1 site (New York, United States)
Project IDNIH-11099959 on NIH RePORTER

What this research studies

ALS and FTD are complex brain diseases, and while a specific gene change (C9orf72) is a common cause, not everyone with this change develops the illness. This suggests other factors are at play, and we believe that changes in how our genes are 'read' or 'expressed' (epigenetics) might be very important. We are looking closely at specific DNA changes, called methylation, around the C9orf72 gene in patients. Our goal is to understand if these methylation changes determine when symptoms start and how the disease progresses.

Who could benefit from this research

Good fit: This research is most relevant to individuals who carry the GGGGCC repeat expansion in the C9orf72 gene and are affected by or at risk for ALS or FTD.

Not a fit: Patients whose ALS or FTD is not linked to the C9orf72 gene expansion may not directly benefit from this specific line of research.

Why it matters

Potential benefit: If successful, this work could lead to new ways to predict, prevent, or treat ALS and FTD by targeting these epigenetic changes.

How similar studies have performed: While no effective treatments currently exist for C9orf72-related ALS/FTD, epigenetic factors are increasingly recognized as important contributors to disease risk and progression in neurodegenerative disorders.

Where this research is happening

New York, 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.