An Epidemiological Perspective on Neuromuscular Disorders

Nationwide registries in practice

Hanneke Deenen • Boek • paperback

• Samenvatting
  Free download at https://doi.org/10.54195/9789465151120
  This thesis focuses on the epidemiology of neuromuscular disorders (NMD), more commonly known as muscle diseases. The prevalence and incidence of these disorders is often only partly known, while this information is needed to make appropriate decisions for both individual and population-based care.
  To this end, we conducted a literature review and used CRAMP1.0 (Computer Registry of All Myopathies and Polyneuropathies). By combining CRAMP1.0 with data from other sources, we provided incidence estimates for 15 NMD. We also presented age and gender-specific distributions and geographical variation for a number of NMD. We then used the FSHD registry to share information about a large group of people with FSHD, including their experiences during the covid pandemic. We thus demonstrated the usefulness and possibilities of these very different nationwide NMD registries.
  In the discussion, we assessed the applied methods and discussed shortcomings and suggestions for improvement of future registries for rare diseases.
• Productinformatie
  Binding : Paperback
  Distributievorm : Boek (print, druk)
  Formaat : 170mm x 240mm
  Aantal pagina's : 279
  Uitgeverij : Radboud University Press
  ISBN : 9789465151120
  Datum publicatie : 06-2025
  
• Inhoudsopgave
  niet beschikbaar
• Reviews (0 uit 0 reviews)
  Wil je meer weten over hoe reviews worden verzameld? Lees onze uitleg hier.