Plain-English translation of NCT00317616 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
This is a long-term research study designed to follow healthy people who carry a gene mutation linked to ALS — a serious neurodegenerative disease that runs in families. Researchers want to understand what changes happen in the body and brain *before* any symptoms show up, which could help develop treatments or prevention strategies in the future. You would be helping science by allowing researchers to study your health over many years.
ALS often runs in families due to inherited genetic mutations. By studying people who carry these mutations but don't yet have symptoms, researchers hope to discover early warning signs and develop ways to prevent or delay the disease.
You likely qualify if…
You likely don't qualify if…
You would travel to Miami approximately every 12 to 24 months for in-person visits lasting a few days, where you'll undergo various tests like MRI scans, blood draws, spinal fluid collection, and cognitive assessments. Between visits, researchers will call you periodically to check on your health. This commitment would continue for at least 10 years. The study covers all travel costs, and you can choose whether or not to learn your genetic test results.
AI-generated summary from trial data · Jun 10, 2026 · Not medical advice
United States
Sponsor
University of Miami
Collaborators
ALS Association
Enrollment target
~500 participants
Started
April 2006
Primary completion
December 2037
Age range
18 Years and older
Last updated on clinicaltrials.gov in March 2026.
Reach out to the team running this trial. Response times vary — some teams are faster than others.
Central contact
Anne-Laure M Grignon, MD
University of Miami
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.