A new Standard of Care in spinal muscular atrophy has been published.

Eight years after the original Consensus Statement for Standard of Care in Spinal Muscular Atrophy was first published in 2007, doctors from all over the world realised that it was time to update the Standard with new experience and knowledge. Soon, eight teams, each composed of eight experts, began huge collabroative work on a new document that would set a new standard of care in spinal muscular atrophy.

Several meetings, thousands of discussions and three years later the outcome was published in the respected medical journal Neuromuscular Disorders. The publication, in two parts, carries a simple title: “Diagnosis and management of spinal muscular atrophy”.

While a work in progress in a few places, the Standard is a major upgrade over what was available before. Below, we are sharing the publications for the benefit of both SMA families and healthcare professionals.

PART 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care

Download Standard of Care Part 1

PART 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics

Download Standard of Care Part 2

We wish these medical guidelines are accepted and followed by all the doctors who care for patients with spinal muscular atrophy.