Developing targeted therapies for patients with rare forms of ALS

Silence ALS: A Platform for the Discovery and Development of Antisense Therapeutics for Patients with Ultra-Rare Forms of ALS

NIH-funded research Columbia University Health Sciences · NIH-11034080

This study is looking to develop special treatments for people with very rare genetic changes that cause ALS, using a new approach that targets those specific mutations, so if you have one of these unique mutations, you might get a personalized therapy just for you!

Quick facts

Grant typeU01 cooperative agreement
Study typeNIH-funded research
Funding institutionColumbia University Health Sciences NIH-funded
Lab location1 site (New York, United States)
Project IDNIH-11034080 on NIH RePORTER

What this research studies

This research focuses on creating personalized treatments for patients with ultra-rare mutations causing amyotrophic lateral sclerosis (ALS). By utilizing antisense oligonucleotides (ASOs), the project aims to directly target the genetic mutations responsible for ALS in a subset of patients. The collaboration between Columbia University and the n-Lorem Foundation seeks to expand access to these innovative therapies, which have shown promise in treating more common genetic forms of ALS. Patients with specific mutations will be identified and potentially receive tailored therapies designed to address their unique genetic profiles.

Who could benefit from this research

Good fit: Ideal candidates for this research are ALS patients with ultra-rare genetic mutations, particularly those affecting the TARDBP gene.

Not a fit: Patients with common forms of ALS or those without identifiable genetic mutations may not benefit from this research.

Why it matters

Potential benefit: If successful, this research could provide personalized treatment options for patients with rare genetic forms of ALS, potentially improving their quality of life and disease management.

How similar studies have performed: Previous research has shown success in using antisense oligonucleotide therapies for more common ALS mutations, indicating potential for this novel approach in ultra-rare cases.

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.
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.