Actively Recruiting
Amyotrophic Lateral Sclerosis (ALS) Families Project
Led by Columbia University · Updated on 2026-01-07
300
Participants Needed
1
Research Sites
433 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
This program provides family members of individuals with familial ALS the opportunity to contribute to research focused on learning more about why motor neuron degeneration begins and how or why it progresses. This study provides genetic counseling and testing to help participants understand and manage their risk and determine if they want to learn their genetic status. This study will follow unaffected ALS gene mutation carriers on an annual basis to gather essential information that will ultimately help researchers develop novel therapies for the prevention and treatment of ALS.
CONDITIONS
Official Title
Amyotrophic Lateral Sclerosis (ALS) Families Project
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Men or women of any race or ethnicity aged 18 or older
- No symptoms of ALS or frontotemporal dementia at enrollment
- Has had genetic testing identifying an ALS-spectrum gene mutation OR
- Has a first degree relative who was/is an obligate carrier of a familial ALS-spectrum gene mutation OR
- Has a first degree relative with ALS-spectrum diagnosis and known gene mutation or family with high burden of ALS-spectrum diagnoses
- Deemed at high risk for carrying an ALS-spectrum gene mutation by study team review
- Willing to undergo genetic analysis with option to learn results
- Willing to travel to Columbia University Irving Medical Center every 6-24 months for study procedures
- Capable of providing informed consent or has a legally authorized representative able to consent
You will not qualify if you...
- Known HIV infection
- Known hepatitis B infection
- Known hepatitis C infection
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Columbia University
New York, New York, United States, 10032
Actively Recruiting
Research Team
E
Elizabeth Harrington, MS, CGC
CONTACT
M
Matthew Harms, MD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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