Prevention for ALS
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial aims to gather valuable information about Amyotrophic Lateral Sclerosis (ALS) by collecting medical history, clinical outcomes, and samples such as blood and optional cerebrospinal fluid from individuals genetically at risk for ALS but not yet showing symptoms. The research seeks to better understand ALS and support future studies on this and related neurological diseases. Ideal participants have a close family member with an ALS-related gene or a strong family history of ALS or frontotemporal dementia (FTD). Participants must have access to a smartphone, computer, or tablet to complete certain study activities. As an unphased trial, this study offers a unique opportunity to contribute to foundational research that could lead to breakthroughs in understanding and treating ALS.
Why are researchers excited about this trial?
Most treatments for ALS, such as riluzole and edaravone, focus on slowing disease progression or reducing symptoms. But the treatment in the PREVENT ALL ALS Study is different because it aims to intervene much earlier in the disease process, potentially before significant symptoms appear. Researchers are excited because this approach could delay or even prevent the onset of ALS symptoms by targeting the underlying mechanisms at a much earlier stage. This proactive strategy represents a significant shift from the current reactive treatments, offering hope for more effective management of ALS in the future.
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Baseline Assessment
Initial collection of medical history, clinical outcomes, and baseline measurements
Longitudinal Follow-up
Participants are followed for up to 36 months with regular assessments and sample collections
Sub-study (optional)
Participants may opt into genetic testing for ALS causative genes
Follow-up
Participants are monitored for safety and effectiveness after the main study period
What Are the Treatments Tested in This Trial?
Find a Clinic Near You
Who Is Running the Clinical Trial?
St. Joseph's Hospital and Medical Center, Phoenix
Lead Sponsor
Foundation for the National Institutes of Health
Collaborator
Massachusetts General Hospital
Collaborator
National Institute of Neurological Disorders and Stroke (NINDS)
Collaborator