Jeremy Slayter
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View article: An Exploratory 12-Month Observational Study of Adults with Spinal Muscular Atrophy: Learning From Our Tools
An Exploratory 12-Month Observational Study of Adults with Spinal Muscular Atrophy: Learning From Our Tools Open
Objective: To describe motor, respiratory and quality of life changes in a mixed cohort of adults with spinal muscular atrophy (SMA) from a single tertiary rehabilitation center in Canada and to report preliminary psychometric evidence of …
View article: Thinking outside the box: A re-evaluation of Canadian recommended outcome measures in adult spinal muscular atrophy – report of a national consensus workshop
Thinking outside the box: A re-evaluation of Canadian recommended outcome measures in adult spinal muscular atrophy – report of a national consensus workshop Open
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 …
View article: An exploratory qualitative assessment of patient and clinician perspectives on patient-reported outcome measures and disease-modifying therapies in adults with spinal muscular atrophy
An exploratory qualitative assessment of patient and clinician perspectives on patient-reported outcome measures and disease-modifying therapies in adults with spinal muscular atrophy Open
Objective: To understand patient, caregiver, and clinician perspectives on patient-reported outcome measures, critical functional domains, and disease-modifying therapies in adult spinal muscular atrophy. Design: An exploratory qualitative…
View article: Patient Reported Outcome Measures in Adult Spinal Muscular Atrophy: A Scoping Review and Graphical Visualization of the Evidence
Patient Reported Outcome Measures in Adult Spinal Muscular Atrophy: A Scoping Review and Graphical Visualization of the Evidence Open
BACKGROUND: Spinal Muscular Atrophy (SMA) is a hereditary neuromuscular disease with an estimated prevalence of 1/10 000 births. SMA is increasingly recognized as a multi-system disease with a need to study additional under-recognized heal…
View article: A Canadian Adult Spinal Muscular Atrophy Outcome Measures Toolkit: Results of a National Consensus using a Modified Delphi Method
A Canadian Adult Spinal Muscular Atrophy Outcome Measures Toolkit: Results of a National Consensus using a Modified Delphi Method Open
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…
View article: Implementation of pain best practices as part of the spinal cord injury knowledge mobilization network
Implementation of pain best practices as part of the spinal cord injury knowledge mobilization network Open
Context/objective: The spinal cord injury (SCI) knowledge mobilization network (KMN) is a community of practice formed in 2011 as part of a national best practice implementation (BPI) effort to improve SCI care. This study objective…