Studies

Research into the natural history of ALS, including its earliest manifestations in asymptomatic ALS gene carriers, is a top priority. These research efforts are expected to result in knowledge that can lead to more informative, targeted, and personalized drug development, taking the field one step closer toward the goal of halting, repairing, and/or preventing ALS.

Who can participate?

• Age 18 years of age or older
• Capable of providing informed consent
  Willing to follow study procedures
• First-degree relative of a known carrier of any ALS causative gene (including either symptomatic ALS/Frontotemporal dementia (FTD) patients or asymptomatic ALS gene carriers)
• First-degree relative of an individual with a compelling history of ALS and/or FTD causative gene with a compelling family history of genetic ALS involving at least 2 close relatives with ALS or FTD, at least one of whom had ALS.
• Access to a smartphone or tablet, and internet (need not be in the home – access to a public library or other available computer with internet connection is sufficient)

You may not qualify to participate if you experience the following:

• Noncompliance with protocol requirements
• Evidence of neurological signs or symptoms concerning for ALS of FTD, at the discretion of the site investigator
• Significant cognitive impairment, clinical dementia, or unstable psychiatric illness.
• Clinically significant, unstable medical conditions that may prevent 12 month follow-up

• Participants will be presented an “Informed Consent Form” outlining the details of the study and will be given the opportunity to ask all questions before agreeing to participate.
• Participation is completely voluntary. While participants are encouraged to remain in the study for as long as possible, discontinuation of the study is acceptable at any time, for any reason.
• Participants will complete annual in-person study visits and quarterly remote visits to gather clinical data for up to 3 years
• Biofluid samples (blood and optional Cerebrospinal fluid (CSF)) will be collected at study site visits and blood samples will be collected via home visits for intermittent remote visits.
• Participants will complete short self-report questionnaires and speech tasks via an online portal.
• Participants will have the option to complete genetic testing and discuss results with a licensed genetic counselor.

• Biofluids will be stored in a central biorepository and shared with researchers upon request.
• Clinical data will be stored in NeuroBank, the study electronic data capture system, and the AMP ALS portal, and will be shared with requesting researchers.