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Amyotrophic Lateral Sclerosis (ALS) Families Project
Who can join
Ages 18 to 105 · All sexes
Full eligibility criteria
Inclusion Criteria: * Men or women of any race or ethnicity aged 18 or older * No symptoms of ALS or fronto-temporal dementia at enrollment * Scenario 1: has already had genetic testing that identified an ALS-spectrum gene mutation. * Scenario 2: has a first degree relative who was/is an obligate carrier of a familial ALS-spectrum gene mutation. * Scenario 3: has a first degree relative who has/had an ALS-spectrum diagnosis who had a confirmed ALS-spectrum gene mutation or comes from a family with a high burden of ALS-spectrum diagnoses and a known ALS-spectrum gene mutation. * Scenario 4: is deemed to be at high risk for carrying an ALS-spectrum gene mutation as judged by a review of the family structure and genetic information by the study team. * Willing to undergo genetic analysis, with option of whether or not to learn results * Willing to travel to Columbia University Irving Medical Center (CUIMC) every 6-24 months for study procedures * Capable of providing informed consent and following study procedures, or has a legally authorized representative who is able to consent for the subject. Exclusion Criteria for participation in biosample portion of the study: * Known HIV * Known hepatitis B * Known hepatitis C
About the study
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.
Sponsor: Columbia University · Participants: 300 · Started: Sep 11, 2018
Contact the study team
- Elizabeth Harrington, MS, CGC · Phone: 347-852-5315
Official record on ClinicalTrials.gov — NCT03865420
Locations in the U.S.
| New York | Columbia University, New York |
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.