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 http://jcn.sagepub.com/content/25/12/1559
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.