Tracking disease changes in ALS and related conditions over one year

Plain-English translation of NCT05204017 on ClinicalTrials.gov ↗ · Source last updated April 2026 · Translation generated June 2026 · How we translate trials

What is this trial?

This is an observational study that follows people diagnosed with ALS (amyotrophic lateral sclerosis) and related disorders over the course of one year. Researchers will use brain imaging scans, cognitive and speech tests, and blood samples to track how the disease changes over time. The study aims to better understand disease progression so that future treatments can be developed.

ALS is a progressive disease that affects nerve cells controlling muscles, but scientists don't fully understand why it progresses differently in different people. By carefully tracking changes in the brain, thinking abilities, and blood markers over time, researchers hope to identify patterns that could lead to better treatments and ways to slow the disease.

Do you qualify?

You likely qualify if…

you have been diagnosed with ALS (definite, probable, or possible) or a related disorder such as primary lateral sclerosis, progressive muscular atrophy, or frontotemporal degeneration
you are of legal age in your province or state
you are able to understand and consent to the study
you speak English or French fluently enough to understand instructions and answer questions

You likely don't qualify if…

you have a history of other brain or nervous system diseases such as stroke, head injury, epilepsy, or neuropathy
you have been diagnosed with a psychiatric condition like depression or bipolar disorder, or you currently take psychiatric medications
you have a pacemaker or other medical implant that would make an MRI scan unsafe
you have significant claustrophobia that would prevent you from lying in an MRI scanner for about one hour

What participation looks like

If you have ALS, you will visit the research center up to 5 times over 12 months (at screening, and at 0, 4, 8, and 12 months). At each visit, you'll have an MRI brain scan, cognitive and speech tests, a clinical neurological exam, and provide blood and saliva samples (and optionally a spinal fluid sample). Healthy volunteers will have 3 visits (screening, 0, and 8 months) with similar testing but without the ALS-specific evaluations.

AI-generated summary from trial data · Jun 7, 2026 · Not medical advice

Trial locations(4 sites)

Canada

University of Alberta, Edmonton, Alberta

University of Toronto / Sunnybrook Health Sciences Centre, Toronto, Ontario

McGill University / Montreal Neurological Institute and Hospital, Montreal, Quebec

CHU de Quebec -Universite de Laval, Québec, Quebec