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) – click here to download the guide – to complement the physician guidelines published in August (for more on the physicians’ consensus statement, see The Journal of Child Neurology.)
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:
1) Confirming the diagnosis of SMA
2) Managing breathing
3) Managing eating and nutrition
4) Managing movement and daily activities
5) Preparing for illness
“This has been a very important collaborative effort to help parents and families understand and use the Consensus Statement in their everyday lives,” said Cynthia Joyce, Executive Director of the SMA Foundation. “We hope parents will find the recommendations useful in working with their medical teams.”