Actively Recruiting

Age: 18Years +
All Genders
Healthy Volunteers
ID05204017

Comprehensive Analysis Platform To Understand, Remedy and Eliminate ALS

Led by University of Alberta · Updated on 2026-04-13

150

Participants Needed

4

Research Sites

N/A

Total Duration

On this page

Sponsors

U

University of Alberta

Lead Sponsor

M

McGill University

Collaborating Sponsor

AI-Summary

What this Trial Is About

Researchers are conducting a long-term observational study called CAPTURE ALS to collect detailed information about Amyotrophic Lateral Sclerosis (ALS) and related neurodegenerative disorders. This platform aims to gather and store a wide range of data and biological samples to support future ALS research worldwide. The study includes participants with ALS, related disorders, and healthy controls for comparison to better understand disease progression over time. Participants with ALS or related conditions will attend up to five in-person visits over one year at screening, and at 0, 4, 8, and 12 months. Healthy control participants will have three visits at screening, 0, and 8 months. At each visit after screening, all participants will undergo MRI scans, cognitive and speech assessments, and complete health questionnaires. Those with ALS will also have clinical evaluations specific to their condition, including neurological exams and lung function tests. Biospecimens such as blood, saliva, and optionally cerebrospinal fluid will be collected. During the study, researchers will monitor various outcomes including ALS functional rating, lung capacity, speech ability, neurological function, brain imaging results, cognitive and behavioral screening, quality of life, and ALS-specific questionnaires. These measurements occur every four months over the year. The study collects comprehensive data to understand the progression of ALS and related disorders, with safety and participant well-being monitored throughout the participation period.

CONDITIONS

Brief Title

Comprehensive Analysis Platform To Understand, Remedy and Eliminate ALS

Who Can Participate

Age: 18Years +
All Genders
Healthy Volunteers

Eligibility Criteria

Eligible

You may qualify if you...

  • Patients with ALS classified as definite, probable, laboratory-supported probable, or possible ALS according to revised El Escorial criteria or related disorders including ALS-FTD, PLS, PMA, or asymptomatic individuals with a known ALS mutation
  • Adults of the age of majority in their province of residence or treatment
  • Ability to provide informed consent
  • Proficiency in English or French to understand study instructions and complete questionnaires
  • Healthy controls aged 40 to 80 or age-matched to enrolled patients (+/- 3 years)
  • Healthy controls must be adults of the age of majority in their province of residence or treatment
  • Healthy controls must have the cognitive capacity to provide informed consent
  • Healthy controls must be proficient in English or French to understand study instructions and respond to questionnaires
Not Eligible

You will not qualify if you...

  • Healthy controls with a history of neurological disease including central or peripheral nervous system disorders
  • Healthy controls with a history of clinically diagnosed psychiatric disease or current use of psychiatric medications for such conditions
  • Healthy controls ineligible for MRI due to pacemaker or other contraindications
  • Healthy controls with significant claustrophobia preventing MRI participation

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Your Study Journey

Screening

Duration - Up to 4 weeks

Participants are screened for eligibility to participate in the trial.

Up to 5 in-person visits for patients; 3 in-person visits for healthy controls

Monitoring

Duration - 12 months

Participants with ALS and healthy controls undergo regular assessments including MRI scans, neurocognitive and speech testing, clinical evaluations, questionnaires, and biospecimen collection to observe disease progression or health status over time.

Patients: 4 visits at 0, 4, 8, and 12 months; Healthy controls: 2 visits at 0 and 8 months

Trial Site Locations

Total: 4 locations

1

University of Alberta

Edmonton, Alberta, Canada, T6G 2B7

Actively Recruiting

2

University of Toronto / Sunnybrook Health Sciences Centre

Toronto, Ontario, Canada, M4N 3M5

Actively Recruiting

3

McGill University / Montreal Neurological Institute and Hospital

Montreal, Quebec, Canada, H4A2H6

Actively Recruiting

4

CHU de Quebec -Universite de Laval

Québec, Quebec, Canada, G1J 1Z

Actively Recruiting

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Research Team

C

Claire Magnussen, PhD

S

Sara Moradipoor

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

0

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Published Research Related To This Trial

Comprehensive analysis platform to understand, remedy, and eliminate amyotrophic lateral sclerosis (CAPTURE ALS): Study protocol for a Canadian multicenter, multimodal, longitudinal observational study.

Natalie Saunders, Claire Magnussen, HyungMo Kang...

https://pubmed.ncbi.nlm.nih.gov/41343582