Duchenne Muscular Dystrophy (DMD) Guideline

Duchenne muscular dystrophy (DMD) is a severe muscle disease with symptoms often appearing before the age of two. Diagnosis is typically made between the ages of three and four. It is a progressive condition that not only leads to increasing muscle weakness but also affects multiple organs. DMD occurs in 1 in 4,000 to 6,000 newborn boys, although it can also occur in girls, albeit very rarely.

This guideline focuses on the treatment of patients with DMD and addresses the following topics:

• Corticosteroid treatment
• Types of physical training
• Timing and types of respiratory training
• Screening and management of chewing and swallowing disorders
• Prevention and treatment of contractures
• Prevention and treatment of scoliosis
• Diagnostics, treatment, and support for pain management
• Facilitating societal participation
• Screening for social self-sufficiency and participation
• Care organization

Topics related to the care of patients with DMD not covered in this guideline but included in the international guideline (Birnkrant, 2018a; Birnkrant, 2018b; Birnkrant, 2018c) can be found on the Duchenne Centrum Nederland website.

Intended Audience

This guideline is primarily intended for all professionals involved in the care of patients with DMD. However, it is also available for consultation by other (healthcare) professionals.

Development of the Guideline

The Duchenne Muscular Dystrophy guideline was initiated by the Dutch Association of Rehabilitation Physicians (VRA) in collaboration with the patient organization Duchenne Parent Project, the patient association Spierziekten Nederland, various professional organizations, and Duchenne Centrum Nederland.

The guideline is available in the guidelines database of the Federation of Medical Specialists (FMS).