Plain-English translation of NCT03865420 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
Read our ALS research guide →The ALS Families Project is studying people who carry genes linked to ALS (Lou Gehrig's disease) but haven't developed any symptoms yet. By following these individuals over time and collecting blood and tissue samples, researchers hope to identify the very first changes that happen in the body before ALS symptoms appear, which could help develop treatments to prevent or delay the disease.
About 10% of people with ALS have a family history of the disease, often caused by a genetic mutation. Researchers don't yet understand what happens in the body during the earliest stages—before symptoms show—when intervention might be most effective. This study aims to fill that gap by tracking these early changes.
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If you join, you'll visit Columbia University every 6 to 24 months for study procedures, which may include blood draws, tissue samples, and genetic testing. You'll have the choice of whether you want to learn the results of your genetic tests. The study is designed to follow you over time to see if and when any early disease changes appear, helping researchers understand the disease process before symptoms develop.
AI-generated summary from trial data · Jun 7, 2026 · Not medical advice
United States
Sponsor
Columbia University
Enrollment target
~300 participants
Started
September 2018
Primary completion
January 2027
Age range
18 Years – 105 Years
Last updated on clinicaltrials.gov in January 2026.
Reach out to the team running this trial. Response times vary — some teams are faster than others.
Central contact
Elizabeth Harrington, MS, CGC
Columbia University
Tell us you're interested and we'll help connect you with the research team. We'll walk you through what to expect first — no email needed to get started.