SMA Care Center Network
The SMA Care Center Network is the centerpiece of our efforts to address the changing landscape of SMA.
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 spinal muscular atrophy.
Individuals affected by SMA have complex medical needs. This requires a team approach, with neurologists, pulmonologists, physical and occupational therapists, nutritionists, orthopedists, and others working together to treat the individual. Just as the clinical team takes a multi-faceted approach to treating the individual, Cure SMA takes a multi-faceted approach to improving care for all those affected by SMA.
With the advent of approved therapies for SMA, care is more important than ever before. As treatments extend lifespan, the number of individuals living with SMA will increase. This means we need more doctors and healthcare providers trained in SMA care, particularly for the teen and adult SMA communities. And with new treatments, the experience of SMA is rapidly shifting, and healthcare providers need to adapt quickly to these changing needs.
The network will also help expand access to approved SMA treatments, increase the number of sites for SMA clinical trials, and help accelerate and enhance insurance coverage and reimbursement.
More About the SMA Care Center Network
The SMA 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 geographically diverse 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.
For questions, please contact firstname.lastname@example.org.