An underestimated factor for therapeutic decision-making in rare diseases: parents' (un)knowledge—the example of Duchenne muscular dystrophy caregivers and non-invasive ventilation

An underestimated factor for therapeutic decision-making in rare diseases: parents' (un)knowledge—the example of Duchenne muscular dystrophy caregivers and non-invasive ventilation

Abstract Background Duchenne muscular dystrophy (DMD) is a progressive genetic disease that leads to degeneration of muscles, including respiratory muscles, and requires early introduction of non-invasive ventilation (NIV). Parental knowledge and management strategies for pulmonary care are essentia...

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Main Authors: Eliza Wasilewska, Andrzej Wasilewski, Ewa Pilarska, Jolanta Wierzba, Sylwia Małgorzewicz, Marek Niedoszytko
Format: Article
Language:English
Published: BMC 2025-06-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Duchenne muscular dystrophy
Neuromuscular diseases
Therapeutic decision-making
Parents’ knowledge
Pulmonary care
Non-invasive ventilation
Online Access:https://doi.org/10.1186/s13023-025-03762-9
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https://doi.org/10.1186/s13023-025-03762-9

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