The Canadian prospective cohort study to understand progression in multiple sclerosis (CanProCo): rationale, aims, and study design

Abstract Background Neurological disability progression occurs across the spectrum of people living with multiple sclerosis (MS). Although there are a handful of disease-modifying treatments approved for use in progressive phenotypes of MS, there are no treatments that substantially modify the cours...

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Main Authors: Jiwon Oh, Nathalie Arbour, Fabrizio Giuliani, Melanie Guenette, Shannon Kolind, Larry Lynd, Ruth Ann Marrie, Luanne M. Metz, Scott B. Patten, Alexandre Prat, Alice Schabas, Penelope Smyth, Roger Tam, Anthony Traboulsee, V. Wee Yong
Format: Article
Language:English
Published: BMC 2021-10-01
Series:BMC Neurology
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Online Access:https://doi.org/10.1186/s12883-021-02447-7
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author Jiwon Oh
Nathalie Arbour
Fabrizio Giuliani
Melanie Guenette
Shannon Kolind
Larry Lynd
Ruth Ann Marrie
Luanne M. Metz
Scott B. Patten
Alexandre Prat
Alice Schabas
Penelope Smyth
Roger Tam
Anthony Traboulsee
V. Wee Yong
author_facet Jiwon Oh
Nathalie Arbour
Fabrizio Giuliani
Melanie Guenette
Shannon Kolind
Larry Lynd
Ruth Ann Marrie
Luanne M. Metz
Scott B. Patten
Alexandre Prat
Alice Schabas
Penelope Smyth
Roger Tam
Anthony Traboulsee
V. Wee Yong
author_sort Jiwon Oh
collection DOAJ
description Abstract Background Neurological disability progression occurs across the spectrum of people living with multiple sclerosis (MS). Although there are a handful of disease-modifying treatments approved for use in progressive phenotypes of MS, there are no treatments that substantially modify the course of clinical progression in MS. Characterizing the determinants of clinical progression can inform the development of novel therapeutic agents and treatment approaches that target progression in MS, which is one of the greatest unmet needs in clinical practice. Canada, having one of the world’s highest rates of MS and a publicly-funded health care system, represents an optimal country to achieve in-depth analysis of progression. Accordingly, the overarching aim of the Canadian Prospective Cohort Study to Understand Progression in MS (CanProCo) is to evaluate a wide spectrum of factors associated with the clinical onset and rate of disease progression in MS, and to describe how these factors relate to one another to influence progression. Methods CanProCo is a prospective, observational cohort study with investigators specializing in epidemiology, neuroimaging, neuroimmunology, health services research and health economics. CanProCo’s study design was approved by an international review panel, comprised of content experts and key stakeholders. One thousand individuals with radiologically-isolated syndrome, relapsing-remitting MS, and primary-progressive MS within 10–15 years of disease onset will be recruited from 5 academic MS centres in Canada. Participants will undergo detailed clinical evaluation annually over 5 years (including advanced, app-based clinical data collection). In a subset of participants within 5–10 years of disease onset (n = 500), blood, cerebrospinal fluid, and research MRIs will be collected allowing an integrated, in-depth evaluation of factors contributing to progression in MS from multiple perspectives. Factors of interest range from biological measures (e.g. single-cell RNA-sequencing), MRI-based microstructural assessment, participant characteristics (self-reported, performance-based, clinician-assessed, health-system based), and micro and macro-environmental factors. Discussion Halting the progression of MS remains a fundamental need to improve the lives of people living with MS. Achieving this requires leveraging transdisciplinary approaches to better characterize why clinical progression occurs. CanProCo is a pioneering multi-dimensional cohort study aiming to characterize these determinants to inform the development and implementation of efficacious and effective interventions.
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spelling doaj.art-eb244b7ca06b45aca81b35c146d526762022-12-22T04:03:44ZengBMCBMC Neurology1471-23772021-10-0121111910.1186/s12883-021-02447-7The Canadian prospective cohort study to understand progression in multiple sclerosis (CanProCo): rationale, aims, and study designJiwon Oh0Nathalie Arbour1Fabrizio Giuliani2Melanie Guenette3Shannon Kolind4Larry Lynd5Ruth Ann Marrie6Luanne M. Metz7Scott B. Patten8Alexandre Prat9Alice Schabas10Penelope Smyth11Roger Tam12Anthony Traboulsee13V. Wee Yong14Division of Neurology, St. Michael’s Hospital, University of TorontoDepartment of Neurosciences, Université de Montréal and Centre hospitalier de l’Université de MontréalDivision of Neurology, Department of Medicine and Neuroscience and Mental Health Institute, University of AlbertaDivision of Neurology, St. Michael’s Hospital, University of TorontoDepartment of Medicine, Division of Neurology, University of British ColumbiaFaculty of Pharmaceutical Sciences, University of British ColumbiaDepartments of Internal Medicine and Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of ManitobaDepartment of Clinical Neurosciences, University of Calgary Foothills HospitalDepartment of Community Health Sciences, University of CalgaryDepartment of Neurosciences, Université de Montréal and Centre hospitalier de l’Université de MontréalDepartment of Medicine, Division of Neurology, University of British ColumbiaDivision of Neurology, Department of Medicine and Neuroscience and Mental Health Institute, University of AlbertaDepartment of Radiology, University of British ColumbiaDepartment of Medicine, Division of Neurology, University of British ColumbiaDepartment of Clinical Neurosciences and the Hotchkiss Brain Institute, University of CalgaryAbstract Background Neurological disability progression occurs across the spectrum of people living with multiple sclerosis (MS). Although there are a handful of disease-modifying treatments approved for use in progressive phenotypes of MS, there are no treatments that substantially modify the course of clinical progression in MS. Characterizing the determinants of clinical progression can inform the development of novel therapeutic agents and treatment approaches that target progression in MS, which is one of the greatest unmet needs in clinical practice. Canada, having one of the world’s highest rates of MS and a publicly-funded health care system, represents an optimal country to achieve in-depth analysis of progression. Accordingly, the overarching aim of the Canadian Prospective Cohort Study to Understand Progression in MS (CanProCo) is to evaluate a wide spectrum of factors associated with the clinical onset and rate of disease progression in MS, and to describe how these factors relate to one another to influence progression. Methods CanProCo is a prospective, observational cohort study with investigators specializing in epidemiology, neuroimaging, neuroimmunology, health services research and health economics. CanProCo’s study design was approved by an international review panel, comprised of content experts and key stakeholders. One thousand individuals with radiologically-isolated syndrome, relapsing-remitting MS, and primary-progressive MS within 10–15 years of disease onset will be recruited from 5 academic MS centres in Canada. Participants will undergo detailed clinical evaluation annually over 5 years (including advanced, app-based clinical data collection). In a subset of participants within 5–10 years of disease onset (n = 500), blood, cerebrospinal fluid, and research MRIs will be collected allowing an integrated, in-depth evaluation of factors contributing to progression in MS from multiple perspectives. Factors of interest range from biological measures (e.g. single-cell RNA-sequencing), MRI-based microstructural assessment, participant characteristics (self-reported, performance-based, clinician-assessed, health-system based), and micro and macro-environmental factors. Discussion Halting the progression of MS remains a fundamental need to improve the lives of people living with MS. Achieving this requires leveraging transdisciplinary approaches to better characterize why clinical progression occurs. CanProCo is a pioneering multi-dimensional cohort study aiming to characterize these determinants to inform the development and implementation of efficacious and effective interventions.https://doi.org/10.1186/s12883-021-02447-7Multiple sclerosisCohortProspectiveProgressionProgressive MSEpidemiology
spellingShingle Jiwon Oh
Nathalie Arbour
Fabrizio Giuliani
Melanie Guenette
Shannon Kolind
Larry Lynd
Ruth Ann Marrie
Luanne M. Metz
Scott B. Patten
Alexandre Prat
Alice Schabas
Penelope Smyth
Roger Tam
Anthony Traboulsee
V. Wee Yong
The Canadian prospective cohort study to understand progression in multiple sclerosis (CanProCo): rationale, aims, and study design
BMC Neurology
Multiple sclerosis
Cohort
Prospective
Progression
Progressive MS
Epidemiology
title The Canadian prospective cohort study to understand progression in multiple sclerosis (CanProCo): rationale, aims, and study design
title_full The Canadian prospective cohort study to understand progression in multiple sclerosis (CanProCo): rationale, aims, and study design
title_fullStr The Canadian prospective cohort study to understand progression in multiple sclerosis (CanProCo): rationale, aims, and study design
title_full_unstemmed The Canadian prospective cohort study to understand progression in multiple sclerosis (CanProCo): rationale, aims, and study design
title_short The Canadian prospective cohort study to understand progression in multiple sclerosis (CanProCo): rationale, aims, and study design
title_sort canadian prospective cohort study to understand progression in multiple sclerosis canproco rationale aims and study design
topic Multiple sclerosis
Cohort
Prospective
Progression
Progressive MS
Epidemiology
url https://doi.org/10.1186/s12883-021-02447-7
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