Family Guide

Family Guide
  • Contacts
  • Thomas Sejersen
    Thomas Sejersen
    Thomas Sejersen holds positions as Professor in Neuropediatrics at the Department of Women's and Children's...
  • Diane Smith-Hoban
    Diane Smith-Hoban
    Diane Smith-Hoban is the mom to two great boys – Luke is 14 and has...

Download CMD Family Guide

The family guide available on this page summarizes an international consensus on congenital muscular dystrophy (CMD) diagnosis and medical care. It was created by a working group which was lead by Cure CMD and their effort was also supported by TREAT-NMD, AFM-Association Française contre les Myopathies, and Telethon Italy.

The guide is based on the main academic consensus document which is published in the Journal of Child Neurology (Ching H Wang, et al. Consensus Statement on Standard of Care for Congenital Muscular Dystrophies, J Child Neurology 2010;25(12):1559 –1581. Published online 15 Nov 2010). This can be downloaded for free

The family-guide "translates" the full academic publication into a form that is more readily understandable to non-specialists and will enable families to have a clear guideline that they can use to discuss their care with their care providers.

The treatment guidelines are based on medical management recommendations by a group of 82 international experts from 7 medical subspecialties: pathology, neurology, pulmonary/ICU care, gastrointestinal/nutrition/ speech/oral care, orthopedics/rehabilitation, cardiology, and palliative care.

  • To build consensus, the team used the following strategies:
  • a comprehensive literature review
  • an online expert survey of how CMD care is currently provided in their practice
  • an online survey of families' opinions on key care issues and care gaps in CMD
  • a 2-day CMD Standard of Care work shop, held in Brussels in November 2009.

For further information about this initiative, please contact Diane Smith-Hoban: Cure CMD Lead, CMD Lay Guideline Development.

This guide is currently being translated into several different languages. If you are willing to voluntarily translate the guide please contact Diane Smith-Hoban.

Download CMD Family Guide

12 Apr 2017