Related Experiment Video
Updated: Jun 16, 2026
Utility of Dissociated Intrinsic Hand Muscle Atrophy in the Diagnosis of Amyotrophic Lateral Sclerosis
Published on: March 4, 2014
Comprehensive analysis platform to understand, remedy, and eliminate amyotrophic lateral sclerosis (CAPTURE ALS):
Natalie Saunders1, Claire Magnussen1, HyungMo Kang1
1The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Background:
The marked heterogeneity of Amyotrophic Lateral Sclerosis (ALS) combined with a lack of biomarkers are key contributing factors to the lack of disease-modifying treatments. The Comprehensive Analysis Platform to Understand Remedy and Eliminate ALS (CAPTURE ALS) is a Canadian platform designed to create the most comprehensive picture of people living with ALS with the objective of facilitating ALS research initiatives worldwide.
Objectives:
The main aims of CAPTURE ALS include: (1) to characterize ALS and healthy controls with biosamples and data in order to provide the most comprehensive picture of individuals living with ALS to date; (2) to create a de-identified database and biosample repository linked to detailed clinical information; and (3) to develop and implement an inclusive and transparent participant engagement strategy to be active throughout all stages of CAPTURE ALS.
Methods/Results:
CAPTURE ALS is a prospective, multicenter, observational, longitudinal study. People living with ALS, or a related disease and healthy controls undergo a harmonized protocol including the collection of detailed clinical information, neurological and cognitive examination, speech recording, advanced magnetic resonance imaging, and biosampling. Data and samples are stored in a biobank operating under an open science governance framework. An inclusive and transparent participant engagement strategy was designed and implemented throughout all stages of CAPTURE ALS. Four sites are operating in the consortium with a fifth being onboarded. The target enrollment is 120 affected participants and 50 controls, with the first participant visit having occurred in March 2022. Recruitment is ongoing.
Discussion:
CAPTURE ALS is a scalable clinical research platform that connects scientists and patients to facilitate efficient translational research. The unique and deeply phenotyped data and biosamples are a global resource towards the development of biomarkers and understanding ALS biology. This study is registered at clinicaltrials.gov (NCT: NCT05204017).
Insights
The Comprehensive Analysis Platform to Understand Remedy and Eliminate ALS (CAPTURE ALS) platform collects extensive data and biosamples to advance Amyotrophic Lateral Sclerosis (ALS) research. This initiative aims to develop biomarkers and deepen the understanding of ALS biology.
Area of Science:
- Neuroscience
- Biomedical Research
- Clinical Trials
Background:
- Amyotrophic Lateral Sclerosis (ALS) is characterized by significant heterogeneity and a lack of biomarkers, hindering the development of effective treatments.
- The Comprehensive Analysis Platform to Understand Remedy and Eliminate ALS (CAPTURE ALS) is a Canadian initiative to create a detailed profile of individuals with ALS.
- This platform aims to facilitate global ALS research by providing comprehensive data and biosamples.
Purpose of the Study:
- To comprehensively characterize individuals with ALS and healthy controls using biosamples and data.
- To establish a de-identified database and biosample repository linked to detailed clinical information.
- To develop and implement an inclusive, transparent participant engagement strategy throughout the study.
Main Methods:
- A prospective, multicenter, observational, longitudinal study design.
- Harmonized protocol including clinical information, neurological/cognitive exams, speech recording, advanced MRI, and biosampling.
- Data and samples stored in a biobank under an open science governance framework.
Main Results:
- Four sites are operational, with a fifth onboarding; recruitment is ongoing.
- The target enrollment is 120 affected participants and 50 controls.
- The first participant visit occurred in March 2022.
Conclusions:
- CAPTURE ALS is a scalable platform connecting scientists and patients for efficient translational research.
- Deeply phenotyped data and biosamples serve as a global resource for biomarker development and understanding ALS.
- The study is registered at clinicaltrials.gov (NCT: NCT05204017).
