In 2018, Cure SMA launched the SMA Care Center Network, a collection of specialized clinics across the nation to help ensure all those living with spinal muscular atrophy (SMA) are able to receive high-quality, multidisciplinary care and access to new therapies. As of April 2019 there are 10 contracted partner sites, with a total of 24 anticipated by the end of the year.
The SMA Care Center Network is collecting large bodies of data to analyze and develop an evidence-based standard of care for healthcare providers. Currently there are approximately 50 patients with over 80,000 data points as a robust start to the Cure SMA Registry. Because SMA affects only one in every 11,000 infants, 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.
By connecting SMA Care Centers to one another and utilizing a united registry to collect data, healthcare providers, including neurologists, pulmonologists, physical and occupational therapists, nutritionists, and orthopedists and others, will be able to work together to provide complete and comprehensive treatment. The Cure SMA Clinical Care network will facilitate these clinical teams to take a multi-faceted approach to treat SMA.
Join Us for a Webinar on the SMA Care Center Network
On Wednesday, April 24, Cure SMA will host a webinar on the SMA Care Center Network.
During the webinar, you’ll hear from Cure SMA’s clinical care team on our SMA Care Center Network, a network of geographically diverse centers across the US. The goal of the SMA Care Center Network is to develop an evidence-based standard of care that will improve the lives of all those affected by SMA. The network will also expand access to approved SMA treatments, increase the number of sites for SMA clinical trials, and help accelerate and enhance insurance coverage and reimbursement. Learn more about our efforts and why we believe SMA care is more important than ever. This webinar will also include a Q&A session.
For additional information, download our fall 2019 issue of Compass.