A major international consensus document setting out best practice in care for Duchenne muscular dystrophy (DMD) is now available as an e-publication from the Lancet Neurology journal ahead of its printed release in January 2010. The product of an extensive review process by 84 international experts representing 20 disciplines across DMD diagnosis and care, this document is a unique guide for individuals, care providers and families to comprehensive healthcare management for individuals with DMD. Our own DF Educational Advisor, Brisbane physiotherapist, Helen Posselt was amongst the experts participating in the working group.
The drafting of these guidelines is the result of a three-year-long project guided by the US Centers for Disease Control (CDC) using a rigorous review process that required expert panels to consider more than 70 thousand different care scenarios. The preparation of the guidelines was supported by advocacy groups worldwide and by TREAT-NMD (www.treat-nmd.eu), an international network formed to advance diagnosis, care and treatment for people with neuromuscular diseases. In a close collaboration between TREAT-NMD, patient advocacy groups and healthcare professionals, the full academic publication is also being transformed into a comprehensive "family guide", which will be made available at the start of 2010.
