Care standards for SMA
- Ching Wang Ching Wang is Associate Professor of the Department of Neurology at Stanford University and Director...
|Consensus statement for standard of care in
spinal muscular atrophy.
Wang CH, Finkel RS, Bertini ES, Schroth M, Simonds A, Wong B, Aloysius A, Morrison L, Main M, Crawford TO, Trela A; Participants of the International Conference on SMA Standard of Care.
J Child Neurol. 2007 Aug;22(8):1027-49.
About the full academic consensus publication
Recent progress in the understanding of the molecular pathogenesis of SMA and improvements in medical technology have not been matched by similar developments in the care for SMA patients. Variations in medical practice coupled with differences in family resources and values have resulted in variable clinical outcomes that are 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 warrant 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.