Spinal muscular atrophy is a rare medical condition that often requires complex multidisciplinary care. For this reason, SMA experts have developed and published consensus guidelines on care in this disease.
The first document titled Consensus Statement for Standard of Care in Spinal Muscular Atrophy was published in 2007. Cementing the best practice in clinical care, it has guided clinicians for years. In 2015–2017, a global team of experts reviewed the existing knowledge and clinical practice and developed a new version of the document which was published in 2017 in two parts under a simple title Diagnosis and management of spinal muscular atrophy. You can read and download the document below.
PART 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care
PART 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics
We stress that it is crucial that these medical guidelines are accepted and followed by all doctors who care for patients with spinal muscular atrophy.
Family version of the Standard of Care
In 2019, a family-friendly version of the 2017 Standard of Care was published by TREAT-NMD, a global academic network that focuses on neuromuscular disorders. You can read/download it below.