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
2018 STANDARDS OF CARE UPDATE
In partnership with the US Centers for Disease Control and Prevention (CDC), PPMD advocates for and participates in the development, and updates, of standards of care for Duchenne.
In 2018, the updated Care Considerations were published in Lancet Neurology and can be downloaded 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.