Stacey Lintern
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View article: Counting the Cost: The Hidden Financial Realities of Neuromuscular Disease Through Patient and Family Perspectives
Counting the Cost: The Hidden Financial Realities of Neuromuscular Disease Through Patient and Family Perspectives Open
Introduction Neuromuscular diseases (NMDs) impose multifaceted challenges on individuals and their families, often resulting in significant medical and non‐medical expenses. While cost‐of‐illness (COI) studies provide valuable quantitative…
View article: Financial Toxicity and Its Determinants in Individuals Living With Inherited and Acquired Neuromuscular Disorders
Financial Toxicity and Its Determinants in Individuals Living With Inherited and Acquired Neuromuscular Disorders Open
FT is highly prevalent among people living with NMDs, particularly caregivers and those with socioeconomic and clinical vulnerabilities. Policies to improve financial support and health care coverage for NMD-related needs could help allevi…
View article: Assessing the socio-economic burden of inherited and inflammatory neuromuscular diseases (BIND study): a study protocol
Assessing the socio-economic burden of inherited and inflammatory neuromuscular diseases (BIND study): a study protocol Open
Introduction Neuromuscular diseases (NMDs) are rare multisystem, genetic or acquired disorders causing weakness and/or sensory loss. It is essential for governments, insurance providers, and broader society to have a better understanding o…
View article: From Doubt to Diagnosis: Canadian Patient Perspectives on a Limb‐Girdle Muscular Dystrophy Diagnosis
From Doubt to Diagnosis: Canadian Patient Perspectives on a Limb‐Girdle Muscular Dystrophy Diagnosis Open
Introduction Limb‐girdle muscular dystrophies (LGMDs) encompass a rare and genetically diverse set of disorders, posing challenges in diagnosis due to the absence of distinct pathological features, leading to frequent misdiagnoses and inad…
View article: Variability in Newborn Screening Across Canada: Spinal Muscular Atrophy and Beyond
Variability in Newborn Screening Across Canada: Spinal Muscular Atrophy and Beyond Open
Background: Newborn screening (NBS) identifies infants with severe, early-onset diseases, enabling early diagnosis and treatment. In Canada, decisions regarding disease inclusion in NBS programs occur at the provincial level, which leads t…