Español

ALL ALS PREVENT STUDY

Transforming the Landscape of ALS Research

PREVENT Enrollment is Closed

Enrolled first degree relatives of patients with ALS or FTD without current symptoms of ALS

Important Update:

The PREVENT study, which enrolled people at increased genetic risk of developing ALS, has exceeded their enrollment goals, due to the overwhelming support of the at-risk community! As a result, enrollment in PREVENT has closed, as of September 30, 2026. Note: Enrollment for the ASSESS study, which enrolls people living with ALS and people living without ALS (and not at genetic risk) is open for enrollment.

Why is the PREVENT Study Necessary?

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.

Middle aged African American woman in peach colored shirt
Middle aged man with ALS in a blue shirt and a young female nurse

Who was enrolled in PREVENT ALL ALS Study?

PREVENT ALL ALS enrolled adults (18 years of age or older) who met specific eligibility criteria, including:

  • Ability to provide informed consent
  • Willingness to follow study procedures
  • Access to a smartphone or tablet with internet access
  • Being a 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)
  • Being an individual with a compelling family history of genetic ALS involving at least 2 close relatives with ALS and/or FTD, with at least one of these family members having had ALS

What does participation in the PREVENT Study involve?

Enrollment in PREVENT ALL ALS has closed; however, participants currently enrolled continue to complete scheduled study visits and follow-up assessments.

Participants complete:

  • Annual in-person study visits and quarterly remote visits for up to three years
  • Collection of clinical information, blood samples, optional digital health measurements, and optional cerebrospinal fluid (CSF) samples during study visits
  • Online questionnaires and speech assessments
  • Optional genetic testing and counseling, upon request

How are participants’ data and biosamples being used?

  • The biological samples collected during PREVENT are stored in a central biorepository, BioSEND, and may be shared with qualified researchers to support future ALS research, upon approval.
  • The clinical data collected is stored in NeuroBank, the study’s electronic data capture system, and the ALS Knowledge Portal. The data may also be shared with qualified researchers, upon approval.

If you wish for a member of the study team to contact you about the ALL ALS Consortium, please click the button below:

English
Español
Participate Skip to content