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.
Has ALS, classified as definite, probable, laboratory-supported probable, or possible ALS according to the revised El Escorial criteria or a related neurodegenerative disorder including ALS-FTD, PLS, PMA or asymptomatic individuals with a known ALS mutation (as previously confirmed during regular clinical care)
Be of the age of majority in their province of residence/treatment
Have the cognitive capacity to provide informed consent
Have proficiency in English or French in order to understand study instructions and respond to questionnaires
Be between the ages of 40-80 unless age matched to a patient (+/-3 years) who is already enrolled
Be the age of majority in their province of residence/treatment
Have the cognitive capacity to provide informed consent
Have proficiency in English of French to understand study instructions and respond to questionnaires
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
Case-control
Prospective
Not listed
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.
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.
Speech Testing
Changes in speech function over time will be measured using a web-browser based audio and video data collection tool.
Neurological dysfunction as detected during standard neurological examination
Changes in neurological function over time will be measured through a standard neurological examination.
Click on the lead sponsor to view all of their trials.
University of Alberta
Lead sponsor
McGill University
Collaborator
Laval University
Collaborator
University of Toronto
Collaborator
Simon Fraser University
Collaborator
