Scientists track genetic disease over time to find future clues

NCT ID NCT01925196

First seen Nov 01, 2025 · Last updated Apr 20, 2026 · Updated 27 times

Summary

This study aimed to understand how symptoms develop and change over time in people who have a specific genetic mutation (C9ORF72) that causes ALS (Lou Gehrig's disease) and frontotemporal dementia. Researchers followed 50 adults with this mutation for 3 years, measuring their strength, movement, thinking, and memory through tests, brain scans, and fluid samples. The goal was to identify biological markers that could help detect or measure the disease in future research, not to test a treatment.

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Contacts and locations

Locations

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States

Conditions

Explore the condition pages connected to this study.