Explanipedia

L’intégration des tests génétiques dans la prise en charge de la patientèle atteinte de sclérose latérale amyotrophique : un moment critique Open

Ari Breiner, Kerri Schellenberg, Christen Shoesmith · 2025

Integrating genetic testing into management of all patients with amyotrophic lateral sclerosis: a critical juncture Open

Ari Breiner, Kerri Schellenberg, Christen Shoesmith · 2025

Best practice recommendations for the clinical care of spinal bulbar muscular atrophy Open

Kerri Schellenberg, Gudrun Caspar-Bell, Colin A. Ellis, Wendy Johnston, Alexandra King , et al. · 2025

In this guideline, we provide health care professionals with a culturally responsive standard of care for SBMA, and hope this will translate into improved quality of life for people affected by SBMA.

P.102 Clinical predictors of disease progression and survival in ALS: insights from the Canadian Neuromuscular Disease Registry Open

DO Daudu, J Arocha Perez, K. S. Henley, Victoria Hodgkinson, Agessandro Abrahão , et al. · 2025

Background: Amyotrophic Lateral Sclerosis (ALS) leads to progressive functional decline and reduced survival. Identifying clinical predictors like ALSFRS-R and FVC is essential for prognosis and disease management. Understanding progressio…

Thinking outside the box: A re-evaluation of Canadian recommended outcome measures in adult spinal muscular atrophy – report of a national consensus workshop Open

Colleen O’Connell, Xavier Rodrigue, Victoria Hodgkinson, K. S. Henley, Jeremy Slayter , et al. · 2025

Background Disease-modifying therapies for persons with spinal muscular atrophy (SMA) has led to greater need and demand for relevant outcomes assessments. Such tools help monitor disease progression, assess treatment response, and inform …

Reldesemtiv in Amyotrophic Lateral Sclerosis Open

Jeremy M. Shefner, Merit Cudkowicz, Angela Genge, Orla Hardiman, Ammar Al‐Chalabi , et al. · 2025

Importance Treatment options for amyotrophic lateral sclerosis (ALS) remain suboptimal. Results from a phase 2 study of reldesemtiv in ALS suggested that it may slow disease progression. Objective To assess the effect of reldesemtiv vs pla…

Thoracic Electric Impedance Tomography Detects Lung Volume Changes in Amyotrophic Lateral Sclerosis Open

Gregory Hansen, Adam Shaw, Kala Bolt, Ryan Verity, Richard T Y Nataraj , et al. · 2025

Introduction/Aims Spirometry is the conventional means to measure lung function in amyotrophic lateral sclerosis (ALS), but is dependent on patient effort and bulbar strength. We aimed to use electric impedance tomography (EIT), an emergin…

P.058 Neuromuscular neurologists’ experience in recognizing, diagnosing, and treating Long-chain fatty acid disorders (LC-FAOD): a national survey Open

CD Kassardjian, A Dyck, S Andrews, Kerri Schellenberg, Hugh J. McMillan , et al. · 2024

Background: LC-FAOD may be missed in neuromuscular (NM) clinics due to its rarity and absence from common NM genetic panels. The Canadian Neuromuscular Disease Registry (CNDR) collects real-world patient data and includes a network of clin…

Higher than expected incident cases of spinal bulbar muscular atrophy in western Canada Open

Ryan E. Lamont, Malcolm King, Alexandra King, Kerri Schellenberg, Gerald Pfeffer · 2024

ALS Health care provider wellness Open

Gregory Hansen, Sarah Burton-Macleod, Kerri Schellenberg · 2023

The high rate of burnout and challenges of ALS care highlight the need for additional resources, team-building, and formal education around wellness.

Neuromuscular Complications of SARS-CoV-2 and Other Viral Infections Open

Sarah Jacob, Ronak K. Kapadia, Tyler Soule, Honglin Luo, Kerri Schellenberg , et al. · 2022

In this article we review complications to the peripheral nervous system that occur as a consequence of viral infections, with a special focus on complications of severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2). We discuss neu…

Genetic testing for amyotrophic lateral sclerosis in Canada – an assessment of current practices Open

Kristiana Salmon, Nancy Anoja, Ari Breiner, Marvin Chum, Annie Dionne , et al. · 2021

Objective: To understand current genetic testing practices at Canadian ALS clinics. Methods: An online survey and phone interviews, with clinicians practicing in 27 ALS clinics in Canada, were employed to collect data. Quanti…

Highly Elevated Prevalence of Spinobulbar Muscular Atrophy in Indigenous Communities in Canada Due to a Founder Effect Open

Jamie Leckie, Matthew M Joel, Kristina Martens, Alexandra King, Malcolm King , et al. · 2021

We describe a very high prevalence of SBMA in western Canadians of Indigenous descent, which appears to predominantly be due to a founder effect. This necessitates further studies of SBMA in these populations to comprehensively ascertain t…

A Canadian Adult Spinal Muscular Atrophy Outcome Measures Toolkit: Results of a National Consensus using a Modified Delphi Method Open

Jeremy Slayter, Victoria Hodgkinson, Josh Lounsberry, Bernard Brais, Kristine Chapman , et al. · 2021

Background: Spinal Muscular Atrophy (SMA) is a rare disease that affects 1 in 11 000 live births. Recent developments in SMA treatments have included new disease-modifying therapies that require high quality data to inform decisions around…

Botulism-like Syndrome Following Botulinum-A Injection for Hyperhidrosis and Fluoroquinolone Use Open

Ryan Verity, Kerri Schellenberg · 2021

An abstract is not available for this content. As you have access to this content, full HTML content is provided on this page. A PDF of this content is also available in through the 'Save PDF' action button.

CJN volume 48 issue 2 Cover and Front matter Open

Faizal Haji, David Mathieu, Brandon T. Craig, Alicia Hilderley, Adam Kirton , et al. · 2021

An abstract is not available for this content so a preview has been provided. As you have access to this content, a full PDF is available via the ‘Save PDF’ action button.

Recommandations canadiennes pour les pratiques optimales de prise en charge de la sclérose latérale amyotrophique Open

Christen Shoesmith, Agessandro Abrahão, Tim J Benstead, Marvin Chum, Nicolas Dupré , et al. · 2020

POINTS CLÉS La sclérose latérale amyotrophique (SLA) est une maladie progressive invalidante due à une dégénérescence des motoneurones dans le cerveau et la moelle épinière; elle provoque faiblesse, atrophie musculaire, fasciculations et s…

Canadian best practice recommendations for the management of amyotrophic lateral sclerosis Open

Christen Shoesmith, Agessandro Abrahão, Tim J Benstead, Marvin Chum, Nicolas Dupré , et al. · 2020

KEY POINTS Amyotrophic lateral sclerosis (ALS) is a debilitating, progressive disease with degeneration of motor neurons in the brain and spinal cord causing weakness, muscle atrophy, fasciculations and spasticity.[1][1] Onset in the limbs…

A Phase 2, Double-Blind, Randomized, Dose-Ranging Trial Of <i>Reldesemtiv</i> In Patients With ALS Open

Jeremy M. Shefner, Jinsy Andrews, Angela Genge, Carlayne E. Jackson, Noah Lechtzin , et al. · 2020

To evaluate safety, dose response, and preliminary efficacy of reldesemtiv over 12 weeks in patients with amyotrophic lateral sclerosis (ALS). Methods: Patients (≤2 years since diagnosis) with slow upright vital capacity (SVC…

Photovoice as a Participatory Research Tool in Amyotrophic Lateral Sclerosis Open

Adrianna Gunton, Gregory Hansen, Kerri Schellenberg · 2020

Background: Photovoice is a qualitative research tool increasingly utilized in the healthcare field to understand the illness experience from the patient and caregiver perspective. This is the first study to evaluate photovoice in the cont…

The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry Open

Victoria Hodgkinson, Josh Lounsberry, Saïd M’Dahoma, Alyce Russell, Gordon Jewett , et al. · 2020

We report the recruitment activities and outcomes of a multi-disease neuromuscular patient registry in Canada. The Canadian Neuromuscular Disease Registry (CNDR) registers individuals across Canada with a confirmed diagnosis of a neuromusc…

Response to Provincial Governments’ Decisions Regarding Monitoring for Adults with Spinal Muscular Atrophy Open

Victoria Hodgkinson, Kristine Chapman, Aaron Izenberg, Hanns Lochmüller, Colleen O’Connell , et al. · 2020

An abstract is not available for this content. As you have access to this content, full HTML content is provided on this page. A PDF of this content is also available in through the 'Save PDF' action button.

A National Spinal Muscular Atrophy Registry for Real-World Evidence Open

Victoria Hodgkinson, Maryam Oskoui, Joshua Lounsberry, Saïd M’Dahoma, Emily C Butler , et al. · 2020

Background: Spinal muscular atrophy (SMA) is a devastating rare disease that affects individuals regardless of ethnicity, gender, and age. The first-approved disease-modifying therapy for SMA, nusinursen, was approved by Health Canada, as …

Rural Residence and Diagnostic Delay for Amyotrophic Lateral Sclerosis in Saskatchewan Open

Melissa Diane Armstrong, Gregory Hansen, Kerri Schellenberg · 2020

Background: Diagnostic delay in amyotrophic lateral sclerosis (ALS) is common. In a recent Canadian study evaluating provincial differences in care, Saskatchewan had the longest delay at 27 months. Since Saskatchewan has a large rural popu…

Expression of Human Endogenous Retrovirus-K in Spinal and Bulbar Muscular Atrophy Open

Cody Rex, Marie-Josée Nadeau, Renée N. Douville, Kerri Schellenberg · 2019

Background: Spinal and Bulbar Muscular Atrophy (SBMA) is caused by the extension of the polyglutamine tract within the androgen receptor (AR) gene, and results in a multisystem presentation, including the degeneration of lower motor…

Provincial Differences in the Diagnosis and Care of Amyotrophic Lateral Sclerosis Open

Victoria Hodgkinson, Josh Lounsberry, Ario Mirian, Angela Genge, Timothy Benstead , et al. · 2018

Background: Amyotrophic lateral sclerosis (ALS) is a progressive motor neuron disease resulting in muscle weakness, dysarthria and dysphagia, and ultimately respiratory failure leading to death. Half of the ALS patients survive less than 3…

Patient perspectives on transitioning to amyotrophic lateral sclerosis multidisciplinary clinics Open

Kerri Schellenberg, Gregory Hansen · 2018

ALS patients transitioned to MDCs reported many of the advantages and disadvantages reported elsewhere. A novel perspective of a MDC's advocacy potential was recognized, and the need for an innovative approach to meet demands for individua…

Prehospital Management of Acute Stroke in Rural versus Urban Responders Open

Gregory Hansen, Simerpreet Bal, Kerri Schellenberg, Susan Alcock, Esseddeeg Ghrooda · 2017

Objective: Stroke guideline compliance of rural Canadian prehospital emergency medical services (EMS) care in acute stroke is unknown. In this quality assurance study, we sought to compare rural and urban care by prehospital EMS evaluation…

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