Amyotrophic Lateral Sclerosis (ALS) Families Project

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.