Inclusion Criteria for PREVENT ALL ALS
• Age 18 years or older
• Capable of providing informed consent
• Willing to follow study procedures
• First-degree relative of a known carrier of any ALS causative gene1 (regardless of
whether ALS or FTD has actually been symptomatic in the family)
OR• First-degree relative of an individual with ALS and/or FTD in a family with a
“compelling family history” of ALS/FTD, regardless of whether genetic testing
has occurred in symptomatic family members. A “compelling family history” is
defined as a pedigree with at least 2 close relatives who had ALS or FTD, with at
least one of those family members having had ALS.
• Access to a smartphone, computer, or tablet, and internet (need not be in the home
– access to a public library or other available computer with internet connection is
sufficient)
 

Exclusion Criteria for PREVENT ALL ALS
1. Evidence of neurological signs or symptoms concerning for ALS of FTD, at the
discretion of the site investigator which will be communicated to the applicant along
with referral for appropriate clinical follow-up.
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Intervention/Interaction Detailed Protocol
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2. Significant cognitive impairment, clinical dementia, or unstable psychiatric illness,
including psychosis, active suicidal ideation, suicide attempt, or untreated major
depression <= 90 days (about 3 months) of screening, which in the opinion of the
Investigator would interfere with the study procedures
3. Clinically significant, unstable medical condition (e.g., cardiovascular instability,
systemic infection, untreated thyroid dysfunction, malignant and potentially
progressive cancer) that would render the participant unlikely to be able to complete
12 months of follow-up, according to Investigator's judgment
 

Exclusion Criteria for Participants Undergoing Optional Lumbar Puncture
1. Medically unable to undergo lumbar puncture (LP) as determined by the site
investigator (i.e., bleeding disorder, a skin infection at or near the LP site, known or
suspected intracranial or intraspinal tumor or other cause of increased intracranial
pressure).
2. Allergy to Lidocaine or other local anesthetic agents.
3. Use of anticoagulant medication or antiplatelet medications (aside from aspirin 81 mg)
that cannot be safely withheld prior to lumbar puncture.
4. Blood dyscrasia, abnormal bleeding diathesis, or the use of dialysis for renal failure.
5. Current pregnancy based on participant self-report
6. Clinical judgement of the site investigator that the participant would be unable to
undergo multiple lumbar punctures.
4.4 Inclusion Criteria for Genetic Testing Results Sub-study
• Age 18 years of age or older
• Capable of providing informed consent
• Willing to follow study procedures
• Currently enrolled in the PREVENT ALS Study
1 Gene Eligibility Criteria: Gene is ranked as ClinGen Definitive or Strong Classification
and Variant is Classified as Pathogenic or Likely Pathogenic by ACMG Criteria. If only
the gene and not the specific variant is known to the participant, they are eligible if the
gene is ranked as Definitive or Strong. If gene is not Definitive or Strong classification or
Variant is classified as a variant of uncertain significance, participant’s eligibility must be
submitted for adjudication by PREVENT study team.
 

Exclusion Criteria for Genetic Testing Sub-Study
1. Presence of unstable psychiatric illness (psychosis, active suicidal ideation, suicide
attempt, or untreated major depression) in whom predictive genetic testing would
confer a high risk of harm, at the discretion of the site investigator