Our network is currently in the process of identifying and subsquently targeting a number of areas where the development and implementation of standarised protocols and guidelines would most benefit the neuromuscular community.
In addition to developing these guidelines we are now looking at those already in existence, how we can endorse their content and how we can ensure they reach the widest possible audience. With this in mind, we would like to highlight below some guides which we think you may find useful and our network will be considering for endorsment in the future.
Using updated recommendations, The Muscular Dystrophy Association USA, Parent Project Muscular Dystrophy, TREAT-NMD and the World Duchenne Organisation UPPMD have again worked together to produce a current and comprehensive Duchenne Guide for Families ensuring that the very latest in care standards are accessible to all people living with Duchenne.
The 2018 Duchenne Guide for Families replaces the previous version. To ensure as many people as possible have access, TREAT-NMD and World Duchenne Organisation UPPMD are working with the international Duchenne community to provide translations into a number of languages. As soon as these are completed, we will upload them here. A number of translations are already underway largely thanks to the motivation and dedication of our patient community.
The Spinal muscular atrophy (SMA) care guide for families and their doctors is now available to download in a number of different languages from the TREAT-NMD website. The guide which is based on the information available in the academic article, Consensus statement for standard of care in spinal muscular atrophy is currently available in twenty different translations, translation into additional languages are ongoing and will be made available once complete.
The list available on the website outlines the language translations that TREAT-NMD are involved with.
The family guide for congenital muscular dystrophy (CMD) is available on the TREAT-NMD website. The guide 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 family 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
In essense the 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.
Please note – Currently, these guides, although extensively used worldwide, haven’t been endorsed by EURO-NMD. They are included in this section of the website to highlight some of the work that has already been undertaken, as such this should not be considered a comprehensive list of care guides.