Duchenne型肌营养不良（不能独走期）家庭照护专家共识

doi:10.12372/jcp.2025.24e1209

Abstract

Abstract:

Duchenne muscular dystrophy (DMD) is a severe X-linked recessive neuromuscular disorder characterized by progressive muscle weakness and eventual fatality. In recent years, more and more gene therapies have emerged, and comprehensive care throughout the disease course remains crucial for maximizing patient’s survival and quality of life. This consensus, developed through literature review, expert consultations, and clinical experience, provides guidance for managing following aspects of care in non-ambulatory DMD patients, including respiratory, cardiac, rehabilitation, skeletal, nutritional, digestive, dermatological, cognitive, and psychological care. This aims to provide a scientific and practical support for families caring for non-ambulatory DMD patients.

Key words: Duchenne muscular dystrophy, home care, expert consensus

Society for Neuroscience and Neurology, Chinese Research Hospital Association, SNN/CRHA. Expert consensus on family care for Duchenne muscular dystrophy (non-ambulatory stage)[J].Journal of Clinical Pediatrics, 2025, 43(1): 1-7.

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Expert consensus on family care for Duchenne muscular dystrophy (non-ambulatory stage)

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