Standards of Care
Groups of experts around the world are working together to develop consensus standards detailing best practice in diagnosis and care of individual neuromuscular conditions. As well as the academic consensus documents, family friendly guides have been produced which are aimed at those without a medical background. Guides are currently available for 3 conditions:
- Duchenne muscular dystrophy (DMD)
- Spinal muscular atrophy (SMA)
- Congenital muscular dystrophy (CMD)
More information about the development of consensus standards is available from TREAT-NMD here.
DMD Care Standards
In January and February 2010 the Lancet Neurology journal published the
full internationally agreed "Standards of Care for Duchenne: 'The Diagnosis and
Management of Duchenne Muscular Dystrophy, part 1 and 2". The family guide is available here.
CMD Care Standards
The "Consensus Statement on Standard of Care for Congenital Muscular Dystrophies" was published in the Journal of Child Neurology in November 2010. The family guide is available here.
SMA Care Standards
The "Consensus Statement for Standard of Care in Spinal Muscular Atrophy”, was published in the
Journal of Child Neurology in August 2007.
The family guide is available here.