Directions Spring 2020

Clinical Care Update

Duke University SMA Care Center Team: Stephanie Thera; Edward Smith, MD,; Karen Cornett, BS MT, CRC; Tara McKellar, RN-BSN; and Richard Kravtiz, MD

Cure SMA partners with established neuromuscular care centers across the U.S. to establish best care and practices for all living with SMA. The core of the Cure SMA Care Center Network is the SMA Clinical Data Registry (the SMA Registry). The SMA Registry secures electronic medical record (EMR) information from people with SMA who receive care at Care Center Network sites.

Cure SMA Care Center Network and SMA Registry Goals

A Care Center team documents each usual clinic visit in their EMR as part of usual care. Patients provide their consent and agree to have their care information transferred to the SMA Registry. The SMA Registry information is analyzed to identify best care practices for SMA and will be used to accredit Care Centers of Excellence for SMA. A unique feature of the SMA Registry is that patient information in the EMR is electronical- ly transferred through a secure pathway to the SMA Registry. This information is available to the originating Care Center healthcare team for their review of the patient care data.

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DIRECTIONS | SPRING 2020

UPDATES