Video
SMA Resources for Physicians and Families
Author(s):
Several spinal muscular atrophy (SMA) resources are suggested to help physicians and families, including Cure SMA and standard of care guidelines.
Garey H. Noritz, MD: I’m a general pediatrician, and I’m not super likely to come across a baby with SMA [spinal muscular atrophy] more than once or twice, if ever, in my career. Where can I go to find information to help me be on the lookout? I don’t want to miss it if a baby with SMA does come through my office.
Diana Castro, MD: Cure SMA to me is the best resource we have. It’s this resource that I give to the families but I also recommend to physicians. They have several areas where, as a health care provider, you can go and watch videos, for example. There is something that was recently started called SMArt Moves, which is composed of different tools to help you get into the diagnosis. It shows you videos of key findings and the things you should be looking for to try to get the patient diagnosed. That is one place.
Cure SMA also has the standard of care guidelines. The last ones were published in 2018, so I’m sure we’re going to need to write new ones. These standard guidelines were prepared by different experts in SMA, and they are available on the Cure SMA website as well. It’s a really good resource because even as pediatricians, we try to be the center of care, but we need you to be the center of care with us. We need to work together to make sure the patient is getting all the care they need. They need pulmonology, gastroenterology, orthopedics, and rehab. They need all of these specialties, and these guidelines talk about this, so it’s a really good resource to have.
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Transcript Edited for Clarity
