Cure SMA is pleased to announce receipt of $150,000 grant over three years, awarded by the Oscar G. and Elsa S. Mayer Family Foundation to support continued development of the SMA Care Center Network.
The mission of the SMA Care Center Network is to:
- Improve SMA clinical care and disease management, leading to creation of evidence to support a robust standard of care for SMA.
- Standardize care across the US to improve healthcare delivery, decrease healthcare costs and burden of disease, improve the patient experience, and facilitate more rapid therapeutic development.
- Develop clinical care center capacity to deliver new therapies to individuals with SMA and increase patient access to new treatments.
- Increase the number of sites for SMA clinical trials.
- Provide a resource for local patient services and family support and regional healthcare providers.
The Care Center Network has expanded to 14 centers across the United States and includes:
Advocate Children’s Hospital, Park Ridge, IL
Arkansas Children’s Hospital, Little Rock, AR
Children’s of Alabama, Birmingham, AL
Children’s National, Washington, DC
Duke University Medical Center, Durham, NC
Gillette Children’s Specialty Healthcare, St. Paul, MN
Nemours Children’s Hospital, Orlando, FL
Phoenix Children’s Hospital, Phoenix, AZ,
Seattle Children’s Hospital, Seattle, WA,
University of Missouri Health Care, Columbia, MO
University of Rochester Medical Center, Rochester, NY
University of Utah, Utah Program for Inherited Neuromuscular Disorders, Salt Lake City, UT
University of Texas Southwestern/ Children’s Health, Dallas, TX
Yale Pediatric Neuromuscular Disorder Clinic, New Haven, CT
These centers are committed to partnering with Cure SMA to achieve the mission and goals of the SMA Care Center Network. Centers electronically transfer patient-consented, clinician-entered electronic health record (EHR) data to the SMA clinical data registry for analysis. The SMA clinical data registry provides real world evidence to establish best practice guidelines for care of SMA. The registry data also provides insight into the impact of new therapies on the wider SMA community.
With continued support, the Cure SMA Care Center Network will expand to 24 centers over the next year.
For questions, please contact [email protected].