The epidemiology of neuromuscular disorders: Age at onset and gender in the Netherlands

Johanna C. W. Deenen, Pieter A. van Doorn, Karin Faber, Anneke J. van der Kooi, Jan B. M. Kuks, Nicolette C. Notermans, Leo H. Visser, Corinne G. C. Horlings, Jan J. G. M. Verschuuren, Andre L. M. Verbeek, Baziel G. M. van Engelen*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Based on approximately eight years of data collection with the nationwide Computer Registry of All Myopathies and Polyneuropathies (CRAMP) in the Netherlands, recent epidemiologic information for thirty neuromuscular disorders is presented. This overview includes age and gender data for a number of neuromuscular disorders that are either relatively frequently seen in the neuromuscular clinic, or have a particular phenotype. Since 2004, over 20,000 individuals with a neuromuscular disorder were registered in CRAMP; 56% men and 44% women. The number per diagnosis varied from nine persons with Emery Dreifuss muscular dystrophy to 2057 persons with amyotrophic lateral sclerosis. Proportions of men ranged from 38% with post-polio syndrome to 68% with progressive spinal muscular atrophy, excluding X-chromosome linked disorders. Inclusion body myositis showed the highest median age at diagnosis of 70 years. These data may be helpful in the diagnostic process in clinical practice and trial readiness.
Original languageEnglish
Pages (from-to)447-452
JournalNeuromuscular Disorders
Issue number7
Publication statusPublished - Jul 2016


  • Neuromuscular disorders
  • Neuromuscular diseases
  • Epidemiology
  • Age
  • Gender

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