Cure SMA’s Care Center Network has expanded rapidly since its launch in 2018.
According to a news announcement, the SMA Care Center Network now has 10 locations, and Cure SMA expects a total of 24 locations by the end of 2019.
Care Centers are specialized clinics across the country that help to “ensure all those living with spinal muscular atrophy (SMA) are able to receive high-quality, multidisciplinary care and access to new therapies.”
The Care Centers also collect SMA-related data “to analyze and develop an evidence-based standard of care for healthcare providers.” So far, Cure SMA said, the network has collected more than 80,000 data points from about 50 people living with SMA.
Cure SMA’s long-term plan is to build a unified registry of information that can be shared with healthcare professionals to build comprehensive treatment plans.
“Because SMA affects only one in every 11,000 infants,” Cure SMA said, “many physicians have not cared for people impacted by the disease. This data means ultimately providers and families will have more information on care and treatment of SMA.”
Cure SMA’s annual conference, attended by SMA researchers and families living with SMA, takes place in Anaheim, Calif., in June.