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

The Cure SMA Care Center Network is focused on addressing and changing the landscape of spinal muscular atrophy (SMA). The Care Center Network uses consented SMA patient data to push large scale information to the SMA Clinical Data Registry so researchers, physicians and scientists can assist with developing evidence-based standards of care that will improve the lives of all people with SMA.



Interested in becoming a Cure SMA Care Center? Fill out the form below and we will be in touch with a submission form.



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 need for a central SMA Clinical Data Registry exists because only 1 in every 11,000 individuals are diagnosed with SMA. This Registry allows for an increased understanding of SMA care across the country, using data to drive evidence-based standards of care. To date, there are more than 600 people with SMA in the SMA Clinical Data Registry.

Data Collected

  • Patient Name
  • Sex
  • Date of Birth
  • Race
  • Ethnicity
  • Diagnoses
  • Medications

SMA Specific Data

  • SMN1 Deletion or Point Mutation
  • SMN2 Copy Number
  • Motor Function Scales
  • Allergies
  • Laboratory Test(s)
  • Vital Signs
  • Procedures
  • Care Team
  • Immunizations
  • Functional Status


Value of the SMA Clinical Data Registry

Variety

The diversity of centers in the Care Center Network, both geographically and in the number of SMA patients at each center, provides real-world data that more fully represents current care of SMA community.

Validation

The Care Center Network database platform automatically validates data and accepts only data that is properly formatted and structured, which helps decrease the time spent cleaning and organizing the data.

Standardization

All Care Center sites use modern electronic medical record systems that package data in formats that are standardized. This standardization provides data that is easy to extract, transform, and analyze.

Analyzability

The quality of data in the SMA Clinical Data Registry allows us to derive results that benefit the SMA population through benchmarking and outcome measures, supporting the development of standards of care.