Previous Standards of Care for Spinal Muscular Atrophy (SMA) 2007
About the full academic consensus publication
The first publication to detail what is considered to be the best diagnostic and treatment process a clinician should follow when caring for a person with SMA was published in 2007, entitled ‘consensus statement for standard of care in spinal muscular atrophy’.
Prior to these first care recommendations, progress in the understanding of the molecular pathogenesis of SMA and improvements in medical technology were not matched by similar developments in the care for SMA patients. Variations in medical practice coupled with differences in family resources and values resulted in variable clinical outcomes that were likely to compromise the valid measurement of treatment effects during clinical trial studies.
The International Standard of Care Committee (SCC) for SMA was formed in 2005 with the goal of establishing practice guidelines for the clinical care of SMA patients. The 12 core committee members worked with over 60 SMA experts in the field; through conference calls, e-mail communications, Delphi survey, and two in-person meetings to achieve consensus on 5 care areas: Diagnostic/New Interventions, Pulmonary, Gastrointestinal/Nutrition, Orthopedics/Rehabilitation, and Palliative Care.
Consensus was achieved in several topics regarding common medical problems in SMA, the diagnostic strategies, recommendations for assessment and monitoring, and for therapeutic interventions in each care area. A consensus statement was drafted to address the 5 care areas according to three functional levels of the patients: non-sitter, sitter, and walker. Several medical practices were also identified where there is no consensus, and these required further investigation. The full report, entitled “Consensus Statement for Standard of Care in Spinal Muscular Atrophy”, was published in the Journal of Child Neurology in August 2007. A copy may be obtained from the journal’s website as a free download by clicking the link provided.