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.
Eligibility
Sex
ALL
Min age
18 Years
Max age
—
Healthy volunteers
Accepted
\[PATIENTS\]
Inclusion Criteria:
1. 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)
2. Be of the age of majority in their province of residence/treatment
3. Have the cognitive capacity to provide informed consent
4. Have proficiency in English or French in order to understand study instructions and respond to questionnaires
Exclusion Criteria:
N/A
\[HEALTHY CONTROLS\]
Inclusion Criteria:
1. Be between the ages of 40-80 unless age matched to a patient (+/-3 years) who is already enrolled
2. Be the age of majority in their province of residence/treatment
3. Have the cognitive capacity to provide informed consent
4. Have proficiency in English of French to understand study instructions and respond to questionnaires
Exclusion Criteria:
1. A history of a neurological disease, including Central Nervous System disease (e.g., stroke, head injury, epilepsy) or Peripheral Nervous System disease (neuropathy, myopathy)
2. A history of psychiatric disease (e.g. depression, bipolar disease) that is clinically diagnosed and/or with the current use of psychiatric medications (e.g. antidepressants) for an indication of a psychiatric disease.
3. Subjects ineligible for an MRI due to a pacemaker or other contraindication according to local MRI policies of the study centre.
4. Significant claustrophobia that would prohibit an MRI (subjects will be required to lie in an MRI scanner for approximately one hour).
Primary outcome measure(s)
ALS Functional Rating Scale-Revised (ALSFRS-R) — Once every 4 months for a year 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) — Once every 4 months for a year 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 — Once every 4 months for a year 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 — Once every 4 months for a year Changes in neurological function over time will be measured through a standard neurological examination.
Magnetic Resonance Imaging (MRI) — Once every 4 months for a year Various advanced MRI techniques will be used to assess nervous system structure and function.
Edinburgh Cognitive and Behavioural Screen (ECAS) — Once every 4 months for a year Changes in cognitive function over time will be measured by the ECAS.
ALS Assessment Questionnaire (ALSAQ-5) — Once every 4 months for a year Changes in quality of life over time will be measured using the ALSAQ-5, a participant reported outcome measure.
World Health Organization Quality of Life Questionnaire (WHO-QOL-BREF) — Once every 4 months for a year Changes in quality of life over time will be measured using the WHO-QOL-BREF, a participant reported outcome measure.
Trial sites (4)
Facility
City
Region
Status
University of Alberta
Edmonton
Alberta
Recruiting
University of Toronto / Sunnybrook Health Sciences Centre
Toronto
Ontario
Recruiting
McGill University / Montreal Neurological Institute and Hospital
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
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