Cure SMA: Evaluation of SMA in the Era of Telehealth - Episode 9

SMA Resources for Physicians and Families


Several spinal muscular atrophy (SMA) resources are suggested to help physicians and families: Cure SMA, SMArt Moves, SMA Standard of Care documents, and the Child Neurology Foundation’s Telehealth Tip Sheet.

Diana Castro, MD: What resources are available for physicians and families who suspect or have a patient diagnosed with spinal muscular atrophy [SMA]?

Garey H. Noritz, MD: It’s a lot to drop that diagnosis on a family, and you want to get them support, as well as the pediatrician. There’s an organization called Cure SMA, which is for families, providers, and researchers. It brings them all together to provide care for people with SMA. They have a very nice way of reaching out to newly diagnosed families to get them information and welcome them into the community and so on. Now they have a website and a program called SMArt Moves, which targets both families and pediatricians to help people understand what they should be looking for if they suspect SMA or if they see something that could potentially be SMA. There are videos there, a diagnostic toolkit, and a reference guide. These are some things that both families and pediatricians can use to help point them in that direction.

Separately, there’s a set of standard-of-care documents that were written by SMA experts and have evidence-based information about the diagnosis and treatment of SMA. They’re peer reviewed and available through Medline and also on the Cure SMA website. It’s a very quick place to go and get them. There are all sorts of stuff there, from diagnosis through the care of the adults with SMA.

Diana Castro, MD: That’s great. Do you know any resource that is available for families to navigate the telehealth world?

Garey H. Noritz, MD: Yes. All families and all the doctors could use a little help getting used to telehealth. The Child Neurology Foundation put out a tip sheet that’s aimed at families. It includes what you might expect from a telehealth visit, how to get ready for a telehealth visit, and how to troubleshoot a telehealth visit. It’s very helpful.

Diana Castro, MD: Dr Noritz, thank you so much. It was a very interesting conversation. Thank you for watching this HCPLive® Cure Connections® program. If you’re enjoying the content, please subscribe to our e-newsletter to receive upcoming programs and other great content in your inbox. Thank you so much.

Garey H. Noritz, MD: Thank you.

Transcript Edited for Clarity