The fall 2018 issue of Compass is now available online.
This issue of Compass covers the SMA Care Center Network and its goal of developing an evidence-based standard of care to improve the lives of people with SMA.
SMA Care Center Network
In October, Cure SMA launched the SMA Care Center Network, a collection of specialized clinics across the nation that will help ensure that all those living with SMA are able to receive high-quality, multidisciplinary care. The SMA Care Center Network is a diverse set of hospitals that share clinical data on SMA patients by connecting their electronic medical records to our registry. This will allow us to investigate the impact treatments and care have on SMA, create benchmarks, and certify centers of excellence in the future.
Over the next three years, Cure SMA will invest $9.1 million in the development of the SMA Care Center Network. An important goal of the SMA Care Centers is that they demonstrate a desire to improve SMA care both locally and nationally and offer the following:
- Geographical diversity
- An interdisciplinary care model
- Pediatric and adult care team partnerships
- The capacity to provide FDA-approve therapies for SMA
- An IT team to support the integration of electronic health records (EHRs)
For More Information
To read past issues of Compass, visit our research publications page.