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Improving the Quality of Care for SMA Patients and Families

Welcome to the site for members of the Standard of Care Committee (SCC) for SMA.  This committee was formed as part of an NIH-based initiative focusing on the use of SMA as a model disease for translational research efforts.  The goal of this committee is to develop a consensus statement to guide physicians caring for children with Type I, II, and III SMA.  This guideline will also be used to establish a baseline care standard for SMA clinical trials. The committee will prepare its statement based on input from a variety of experts with experience in SMA and from parents of SMA patients.  This website will serve as a point of contact for members of the committee and will be updated periodically.