The Fall 2019 issue of Compass is now available online.
In this issue we provide a one-year update on the roll-out of the Cure SMA Care Center Network and its efforts to put processes in place that will allow for the development of an evidence-based standard of care to improve the lives of people with SMA.
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. You will hear the experience of one Center as it discusses how it gained internal alignment on participation and set up the infrastructure to support the Network’s goals. This issue will also offer more information regarding the role of the SMA Clinical Data Registry and Newborn Screening Registry.
Cure SMA will continue to invest in the development of the Cure SMA Care Center Network, with the goal 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)
In case you missed it: Summer 2019 Issue of Compass
This issue covered Cure SMA’s latest basic research grant funding and featured a review of the Annual Researcher Meeting.
To read past issues of Compass visit our research publications page.