PREVENT ALL ALS

Overview

About this study

The purpose of this study is to obtain natural history data and perform longitudinal biofluid collection in individuals genetically at risk for ALS/FTD to characterize pre-symptomatic ALS/FTD disease states.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  • 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:

  • 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.
  • 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
  • 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

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 07/19/2024. Questions regarding updates should be directed to the study team contact.

 

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Jacksonville, Fla.

Mayo Clinic principal investigator

Bjorn Oskarsson, M.D.

Contact us for the latest status

Contact information:

Jany Dagher C.C.R.C.

Dagher.Jany@mayo.edu

More information

Publications

Publications are currently not available
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CLS-20580467

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