An observational study in Amyotrophic Lateral Sclerosis, Primary Lateral Sclerosis and Progressive Muscular Atrophy, sponsored by University of Alberta. Recruiting at 4 sites in Canada. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-04-13.
Sponsored by University of Alberta · Observational
CAPTURE ALS is a long-term data and biorepository platform that will facilitate future ALS research. CAPTURE ALS will provide the standardized systems and tools necessary to collect, store, and analyze vast amounts of multimodal information about ALS. These multimodal datasets and biosamples will be made available for use by researchers or industry across Canada and around the world in accordance with the CAPTURE ALS Data Sharing Policy to advance research on ALS.
In this observational study, participants with ALS and related disorders will be followed longitudinally over the course of a year to examine disease progression. Participants with ALS or a related disorder will have up to 5 in-person visits at screening, 0, 4, 8 and 12 months. Healthy controls are included as comparisons and will have 3 in-person visits at screening, 0 and 8 months. At each visit after screening, patients and healthy controls will undergo an MRI, neurocognitive and speech testing, clinical evaluations specific to ALS (ALSFRS-R, FVC, neurological exam, which are not completed by controls), answer questionnaires about their health and have biospecimens, including blood, saliva and optionally cerebrospinal fluid, collected.
978 studies on the registry are indexed under Amyotrophic Lateral Sclerosis; 277 are open to participants now.
This study's planned enrollment of 150 is above the median of 108 across 265 observational studies indexed under Amyotrophic Lateral Sclerosis.
Browse Amyotrophic Lateral Sclerosis studies →University of Alberta is the lead sponsor of 823 studies on the registry; 169 are open to participants now.
Of its 5 completed or terminated interventional studies of FDA-regulated products, 3 (60%) have results posted.
Counted across the registry records on this site, refreshed daily.
People living with ALS and related motor neuron diseases including ALS-Frontotemporal Dementia (ALS-FTD), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA) and asymptomatic individuals with a known ALS mutation
AND
Healthy controls that are age and sex matched to patients
[PATIENTS]
Inclusion Criteria:
Exclusion Criteria:
N/A
[HEALTHY CONTROLS]
Inclusion Criteria:
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
A reason a treatment, test or procedure should not be given to a particular person, such as an allergy, another illness or a medicine they take.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Contraindication
A reason a treatment, test or procedure should not be given to a particular person, such as an allergy, another illness or a medicine they take.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
ALS Functional Rating Scale-Revised (ALSFRS-R)
The ALSFRS-R will be used as a global measure of disease status. It measures activities of daily living and consists of 12 questions, each scored from 0-4, with higher scores representing better function. Changes in ALSFRS-R score over time will be measured.
Time frame: Once every 4 months for a year
Forced Vital Capacity (FVC)
FVC will be used as an index of respiratory function over time. FVC is the maximal volume of air exhaled with maximally forced effort from a maximal inspiration.
Time frame: Once every 4 months for a year
Speech Testing
Changes in speech function over time will be measured using a web-browser based audio and video data collection tool.
Time frame: Once every 4 months for a year
Neurological dysfunction as detected during standard neurological examination
Changes in neurological function over time will be measured through a standard neurological examination.
Time frame: Once every 4 months for a year
Magnetic Resonance Imaging (MRI)
Various advanced MRI techniques will be used to assess nervous system structure and function.
Time frame: Once every 4 months for a year
Edinburgh Cognitive and Behavioural Screen (ECAS)
Changes in cognitive function over time will be measured by the ECAS.
Time frame: Once every 4 months for a year
ALS Assessment Questionnaire (ALSAQ-5)
Changes in quality of life over time will be measured using the ALSAQ-5, a participant reported outcome measure.
Time frame: Once every 4 months for a year
World Health Organization Quality of Life Questionnaire (WHO-QOL-BREF)
Changes in quality of life over time will be measured using the WHO-QOL-BREF, a participant reported outcome measure.
Time frame: Once every 4 months for a year
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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Amyotrophic Lateral Sclerosis →