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Amyotrophic Lateral Sclerosis (ALS) Families Project


Unaffected individuals who have a family member with a known gene mutation associated with amyotrophic lateral sclerosis (ALS) or frontotemporal dementia (FTD) or a strong family history of ALS and FTD are invited to participate in the ALS Families Project. The purpose of this observational study is to learn how and why motor neuron degeneration begins and progresses.

Minimum Age Maximum Age Gender Healthy Volunteers
18 Years 105 Years All No
September 11, 2018
September 2022

  • First-degree relative (parent, sibling, or child) who had an ALS-spectrum diagnosis with a confirmed ALS-spectrum gene mutation, or have tested positive for an ALS-spectrum gene mutation
  • Willing to undergo genetic testing with the option of whether or not to learn results
  • Willing to travel to Columbia University Irving Medical Center every 6 to 24 months for study procedures

  • Symptoms of ALS or FTD
  • Known HIV
  • Known hepatitis B or C

About 10 percent of people with ALS have a family history of ALS or a related condition called frontotemporal dementia (FTD). In most of these familial cases, and in a significant number of people with no family history, a genetic mutation associated with ALS and/or FTD is involved. The ALS Families Project will study unaffected carriers of ALS/FTD-associated gene mutations to investigate the first steps in the disease process leading to motor neuron degeneration. Participants will receive genetic counseling to help them understand and manage their risk and determine if they want to learn their genetic status. The goal is to identify ways to prevent, slow, or stop ALS and FTD. Research visits will occur every 6 to 12 months.

Name City State Zip Status Primary Contact
Columbia University
New York New York 10032 Recruiting Elizabeth Harrington, MS, CGC

Columbia University

Name Role Affiliation
Matthew Harms, MD Principal Investigator Columbia University

Name Phone Email
Elizabeth Harrington 347-852-5315


Amyotrophic Lateral Sclerosis (ALS) Families Project