The goal of the Cure SMA Care Center Network is to develop an evidence-based standard of care that will improve the lives of all those with SMA. One piece of this is data collection, focused on integrating each Centers’ electronic health record with SMA Clinical Data Registry.

Cure SMA Care Center Network

The Cure SMA Care Center Network is the centerpiece of our efforts to address the changing landscape of spinal muscular atrophy (SMA). The goal of the Network is to develop an evidence-based standard of care that will improve the lives of all people with SMA.

Individuals with 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, with SMA Cure SMA takes a multi-faceted approach to improving care for all those with SMA.

With the advent of U.S. Food and Drug Administration (FDA) 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 Cure SMA Care Center 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. Check out our locator map to view all the Cure SMA Care Center Network sites noted below.

Cure SMA Care Center Network Sites

  • Advocate Children’s Hospital, Park Ridge, IL
  • Arkansas Children’s Hospital, Little Rock, AR
  • Boston Children’s Hospital, Boston, MA
  • Children’s of Alabama, Birmingham, AL
  • Children’s National Medical Center, Washington, DC
  • Columbia University, New York, NY
  • Connecticut Children’s Medical Center, Hartford, CT
  • Duke University Medical Center, Durham, NC
  • Gillette Children’s Specialty Healthcare, St. Paul, MN
  • Phoenix Children’s Hospital, Phoenix AZ
  • Stanford Health, Palo Alto, CA
  • Stanford Children’s Health, Palo Alto, CA
  • Seattle Children’s Hospital, Seattle, WA
  • University of Missouri Health Care, Columbia, MO
  • University of Rochester Medical Center, Rochester, NY
  • University of Utah, Program for Inherited Neuromuscular Disorders, SLC, UT
  • University of Texas Southwestern/Children’s Health, Dallas, TX
  • Vanderbilt University Medical Center, Nashville, TN
  • Yale Pediatric Neuromuscular Clinic, New Haven, CT


SMA Clinical Data Registry

The core of the Cure SMA Care Center Network is the SMA Clinical Data Registry. During the initial phase, Cure SMA is focused on integrating each Centers’ electronic health record with the SMA Clinical Data Registry and collecting consented patient data about the care and treatments received. The Care Centers that make up the Network are diverse both in their geographic location and in the number of SMA patients receiving care. This includes remote to urban locations and small-sized to large centers. Each Center must have resources to provide care utilizing a multidisciplinary team, and healthcare team partnerships to provide care across the life span.

The data collected for the SMA Clinical Data Registry will be analyzed to identify care practices that are important for improving SMA care. This information will be used to help the Network improve and achieve accreditation from Cure SMA starting in 2021. SMA Care Guidelines will be developed and disseminated not only among the Cure SMA Care Center Network sites, but will be available to all centers providing care for individuals with SMA and their families. The SMA Clinical Data Registry information will also be used to track real-world evidence about how SMA is changing in response to FDA-approved therapies outside of clinical trials. This information will be used to provide needed information to payers to improve access to these treatments.