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This study aims to follow, genetically and clinically, members of families at high risk for amyotrophic lateral sclerosis (ALS). It includes people aged 18 and older without ALS symptoms who either carry a known ALS-related gene mutation or have a first-degree relative with such a mutation. It is a non-phase study that is currently recruiting.
The summary above is a plain-language rendering of the official record. The original English title is shown for reference.
Criteria are reproduced from the ClinicalTrials.gov record in the original English. Only the trial team can determine eligibility.
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