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New International Standards of Care for SMA

Page last updated 22nd May 2018.

You can now read the new standards of care as published in the scientific journal Science Direct. These are recommendations as to what assessments and interventions families should expect to find in any neuromuscular centre:

Diagnosis and Management of SMA: Part 1 Recommendations for diagnosis, rehabilitation, orthopaedic and nutritional care

Diagnosis and Management of SMA: Part 2.  Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics

These replace the original Standards of Care 2007 which were published as a family-friendly version in 2008. 

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 this year.

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