DMD guide for families
The consensus document The Diagnosis and management of Duchenne muscular dystrophy was published over two editions of the Lancet Neurology in January and February 2010. The result of a three-year-long project guided by the US Centers for Disease Control (CDC) and with input from 84 leading DMD specialists worldwide, this article is a valuable resource for doctors and therapists involved in DMD care, as well as for individuals with DMD and their families. However, as an academic publication, it is not always written in language accessible to people without a medical background.
The Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the United Parent Project Muscular Dystrophy have therefore worked together to produce a comprehensive "guide for families" based closely on the full academic article. The guide can be used on its own or as a supplement to the academic document, and we hope that individuals with Duchenne and their families can use it in collaboration with their care providers to discuss their own specific care needs.
The family guide has been produced in various different formats and will be appearing in many different languages in the near future. In many countries, printed brochures will be available from your own patient organisations. An overview of the "online" versions is provided below.
Care guidelines are an area which need constant attention to ensure that they are being updated and also that the greatest number of patients have access to the best possible levels of care. CARE-NMD is a new EU project to be led by Dr Jan Kirschner from Freiburg and will address these issues. Jo Auld (Kings College London) and Thomas Sejerson (Karolinska Institutet, Stockholm) are looking at new ways of applying TREAT-NMD work on outcome measures to help to assess care standards, commencing with a discussion of the broad considerations, now available at: http://www.researchrom.com/discussion/SoC. This group, working with Elizabeth Vroom has also applied for an ENMC workshop to start the process to ensure that care standards are updated appropriately and with appropriate representation of the views of families and patients.
1) Family guide with images
This version is based on the printed brochure and contains many photos, kindly provided by Duchenne patient organisations around the world. Please be aware that this file contains many images and graphics and will use a lot of ink when printed out. If you want to print this file please use the links below for the print friendly version.
CLICK HERE TO DOWNLOAD UK ENGLISH EDITION (including resources specific to the UK & Ireland)
CLICK HERE TO DOWNLOAD US ENGLISH EDITION
2) "Print-friendly" version
This version contains the same text as the brochure-style version above, but it has been formatted for easier printing (it has larger pages and the photos have been removed).
CLICK HERE TO DOWNLOAD US ENGLISH EDITION (without resources)
3) Translations
Click here to find out which languages the family guide is currently being translated into.
