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, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Claire Magnussen, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
HyungMo Kang, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Mathieu Blais, Neuroscience Axis, CHU de Québec - Université Laval, Québec City, Québec, Canada.
Harpreet Bhinder, Department of Medicine, Division of Neurology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
Gerald Pfeffer, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta, Canada.
Shelagh K. Genuis, Department of Medicine, Division of Neurology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
Liziane Bouvier, School of Communication Sciences and Disorders, McGill University, Montreal, Québec, Canada.
Tanushka Anand, Department of Medicine, Division of Neurology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
Rida Abou-Haidar, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Agessandro Abrahao, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada.
Marie-Noëlle Boivin, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Robert Bowser, Department of Translational Neuroscience, Barrow Neurological Institute, Pheonix, Arizona, United States of America.
Tania Bubela, Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada.
Julia Chiappini, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Samir Das, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Avnit Dhanoa, Department of Medicine, Division of Neurology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
Nicolas Dupré, Neuroscience Axis, CHU de Québec - Université Laval, Québec City, Québec, Canada.
Alan Evans, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Nicolas Ferry, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Yvonne Frater, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada.
Angela Genge, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Simon J. Graham, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada.
Russell Greiner, Department of Computing Science, Faculty of Science, Alberta Machine Intelligence Institute, University of Alberta, Edmonton, Alberta, Canada.
Yasser Iturria Medina, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Wendy S. Johnston, Department of Medicine, Division of Neurology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
Kelvin E. Jones, Faculty of Kinesiology, Sport and Recreation, University of Alberta, Edmonton, Alberta, Canada.
Jason Karamchandani, The Neuro-Montreal Neurological Institute- Hospital, McGill University, Montreal, Québec, Canada.
Jasna Kriz, Department of Psychiatry and Neurosciences, Faculty of Medicine, Université Laval, Québec City, Québec, Canada.
Westerly Luth, Department of Medicine, Division of Neurology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
Geneviève Matte, Department of Neurosciences, Université de Montréal, Montreal, Québec, Canada.

Document Type

Article

Abstract

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).

Medical Subject Headings

Amyotrophic Lateral Sclerosis (diagnosis, epidemiology, pathology); Humans; Canada (epidemiology); Longitudinal Studies; Prospective Studies; Biological Specimen Banks; Female; Male; Biomarkers

Publication Date

1-1-2025

Publication Title

PloS one

E-ISSN

1932-6203

Volume

20

Issue

12

First Page

e0332430

PubMed ID

41343582

Digital Object Identifier (DOI)

10.1371/journal.pone.0332430

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