This guide for families summarises the results of an international consensus on the medical care of Duchenne muscular dystrophy (DMD). This effort was supported by the US Centers for Disease Control and Prevention (CDC), in collaboration with patient advocacy groups and the TREAT-NMD network. The main document is published in Lancet Neurology.
The recommendations are based on an extensive study by 84 international experts in DMD diagnosis and care chosen to represent a broad range of specialties. They independently “rated” methods of care used in the management of DMD to say how “necessary”, “appropriate” or “inappropriate” each one was at different stages of the course of DMD. In total they considered more than 70,000 different scenarios. This allowed them to establish guidelines that the majority agreed represented the “best practice” for DMD care.
The experts stressed that the best management of DMD requires a multidisciplinary approach, with the input of specialists in many different areas, and that there must be a doctor or medical professional that coordinates these efforts. Because everybody is different, the person with DMD and his family should be actively engaged with a medical professional who will coordinate and individualise clinical care.
This document will provide you with basic information to allow you to participate effectively in this process. The doctor or medical professional who coordinates care must be aware of all potential issues in DMD and must have access to the interventions that are the foundations for proper care and to input from different specialties. The emphasis of interventions will change over time. This guide takes you through the different topics or domains of DMD care (Figure 1). Not all of these specialists will be needed at all stages of the condition, but it is important that they are accessible if necessary and that the person coordinating care has support in all these areas.
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