International Standards of Care for SMA
International Standards of Care for SMA
Page last updated: 7th October 2024
The 2017 SoC were published in two articles. They replaced the original Standards of Care 2007 which were published as a family-friendly version in 2008:
- 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
The articles were written before the new disease-modifying drug treatments became more widely available. Even then in 2017, recommended standards of care for children, young people and adults varied and were based on:
- whether they could sit, stand or walk
- whether their breathing was affected by their SMA
- what other daily living activities they could manage.
A 3-year project is now underway to update these standards for the UK. Clinicians and patient reps are reviewing all aspects of care and management. You can find out more and keep up to date with recommendations at SMA Care UK >
You can follow these links to find:
- The Family Friendly UK Guide to the 2017 SoC (pdf)
- Translations of the Family Guide to the 2017 SoC>
And the individual chapters in the guide:
- Chapter 1 – Introduction
- Chapter 2 – Genetics and diagnosis
- Chapter 3 – Physiotherapy and Rehabilitation
- Chapter 4 – Orthopaedic Management
- Chapter 5 – Nutrition, Growth and Bone Health
- Chapter 6 – Breathing (Respiratory and Pulmonary Care)
- Chapter 7 – Other Organs and Systems
- Chapter 8 – Medication
- Chapter 9 – Emergency Care
- Chapter 10 – Anaesthetics
- Chapter 11 – Administration of new treatments for SMA
- Chapter 12 – Ethics and Choices
SMA UK was pleased to have been a very active member of the international group that worked on the project to produce this family guide. We remain grateful to all the people who generously allowed their photos to enrich the UK version.