International Standards of Care for SMA

Page last updated 4th December 2018.

These two articles describe what assessments and interventions families should expect to find in any neuromuscular centre anywhere:

These replace the original Standards of Care 2007 which were published as a family-friendly version in 2008. The new standards were discussed at a workshop in November 2018 attended by our Clinical Care Research Correspondent Dr Alex Murphy. You can read a summary here.

We are working with Treat-NMD and other international patient groups to produce a family-friendly version which we hope will be published by the end of 2018.

How the Standards were Established

In May 2006 the International Conference on the Standard of Care for SMA was held which resulted in 'The Consensus Statement on SMA' published in the Journal of Child Neurology 2007; 22:1027-49.

Thomas Sejersen of the Swedish Karolinska Institute then worked with this group to create a more user-friendly summary of the recommendations. This was published in 2008 by Treat NMD with sponsorship from The Jennifer Trust, as we then were, and the then Muscular Dystrophy Campaign as the “Standards of Care for SMA”. These two documents established general guidelines for the management of SMA and are widely disseminated to health professionals, individuals and families affected by SMA.

SMA Support UK was key in initiating and helping to fund the workshop held in February 2016 for clinical researchers and patient representatives from Europe and the US to start work on reviewing the SoC. Our Clinical Care Research Correspondent, Dr. Alex Murphy, was there.

You can download the 2008 standards here.

Photo from February 2016 meeting