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April 24, 2008
Groups Release Family Version Of SMA Care Standard
The Patient Advisory Group of the International Coordinating Committee (ICC) for SMA Clinical Trials has published a family-friendly set of guidelines for care in spinal muscular atrophy (SMA) to complement the physician guidelines published in August. (For more on the physicians' consensus statement, see "SMA Disease Management Guidelines Released").
The ICC includes representatives of MDA, the SMA Foundation, FightSMA and Families of SMA.
The new publication, "A Family Guide to the Consensus Statement for Standard of Care in Spinal Muscular Atrophy," is designed to guide patients and families in their discussions with doctors and health-care specialists. The committee emphasizes that these guidelines are only suggestions and should not be considered absolute requirements for care.
The Family Guide covers recommendations on these topics:
- Confirming the diagnosis of SMA
- Managing breathing
- Managing eating and nutrition
- Managing movement and daily activities
- Preparing for illness
"We're really pleased to have been part of the process of creating agreed-upon standards of care for SMA," said Sharon Hesterlee, MDA's vice president of Translational Research. "Now more than ever, with so many clinical trials getting under way, it's crucial that diagnosis and care be standardized and that patients remain as healthy as possible in anticipation of the development of disease-modifying treatments."
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