Cure SMA Care Center Network
The mission of the Cure SMA Care Center Network is to provide the best healthcare including offering new therapies and to gather and disseminate new knowledge to advance standard of care for pediatric and adult persons with spinal muscular atrophy (SMA).
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Join the Erin Trainor Memorial Fund in their quest to support the opening of additional multi-disciplinary Care Centers across the country. They are matching all gifts focused on Care Center expansion up to $350,000.
Cure SMA Care Center Network Sites
- Boston Children’s Hospital, Boston, MA
- 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
- The Children’s Hospital of Philadelphia, Philadelphia, PA
- The University of Michigan, Ann Arbor, MI
- University of California, Los Angeles (UCLA), Los Angeles, CA
- University of Miami, Miami, FL
- University of New Mexico, Albuquerque, NM
- University of Rochester Medical Center, Rochester, NY
- University of Utah, Program for Inherited Neuro Disorders, Salt Lake City, UT
- Washington University/St. Louis Children's Hospital, St. Louis, MO
- Baylor College of Medicine, Houston, TX
- Northwestern University, Evanston, IL
- Stanford Health, Palo Alto, CA
- The Ohio State University, Wexner Medical Center, Columbus, OH
- Advocate Children’s Hospital, Park Ridge, IL
- Arkansas Children’s Hospital, Little Rock, AR
- Children’s Healthcare of Atlanta, Atlanta, GA
- Children's Hospital Colorado, Aurora, CO
- Children’s National Medical Center, Washington, D.C.
- Children’s of Alabama, Birmingham, AL
- Phoenix Children’s Hospital, Phoenix AZ
- Seattle Children’s Hospital, Seattle, WA
- Stanford Children’s Health, Palo Alto, CA
- University of Texas Southwestern/Children’s Health, Dallas, TX
- Vanderbilt University Medical Center, Nashville, TN
- Yale Pediatric Neuromuscular Clinic, New Haven, CT
To establish best care, Cure SMA has partnered with SMA care centers throughout the U.S. to form the Cure SMA Care Center Network. Each care center is committed to improving care. Each center shares consented patient information from electronic medical records with the Cure SMA Clinical Data Registry. These centers also share information about how their center provides care to patients with SMA and they engage in reviewing and analyzing the data collected to continuously improve care and progress toward evidence driven care.
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Cure SMA Care CentersAdult and Pediatric sites that provide FDA approved treatments for SMA.
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States and Washington, D.C. with an SMA Care Center.0+
Participants with SMA in the registry.Data as of 3/31/2023
Interested in becoming a Cure SMA Care Center? Fill out the form below and we will be in touch.
About the SMA Clinical Data Registry
The SMA Clinical Data Registry (SMA Registry) is central to our work to improve SMA care. The SMA registry holds SMA patient healthcare data from centers across the US. The ability to gather information on a large number of patients with SMA in one registry is powerful. Analysis of the SMA registry data will guide how every center can provide the best care and drive care improvements throughout the SMA community. This information will be used to set the standard of care for SMA. Standard of care is treatment that is accepted by medical experts as a proper treatment for a certain type of disease and that is widely used by healthcare professionals.
This registry is secure and fire-walled to maintain confidentiality.
- Patient Name
- Sex
- Date of Birth
- Race
- Ethnicity
- Encounters and Providers
- Diagnoses
- Medications, including SMA treatments and timeline
- Procedures
- Laboratory Test(s)
- Vital Signs
- Allergies
- Immunizations
- Patient status
- Family history of SMA
- Diagnostic journey
- SMN1 Deletion or Point Mutation
- SMN2 Copy Number
- Diagnostic Methods
- Screening Methods
- Symptom Onset
- SMA Treatments
- Functional Status
- Motor Function Assessment
Value of the SMA Clinical Data Registry
Diverse and Representative
The diversity of centers in the Care Center Network, both geographically and in the number of patients with SMA at each center, provides real-world data on a broad range of patients. We continue to work toward a registry that fully represents the diverse SMA community so we can better understand current care.
Comprehensive
The SMA Registry platform is populated by an electronic transfer of consented patient electronic medical record (EMR) sourced data. This EMR-sourced data is supplemented with manual entry of specific data to provide a more complete story of each patient’s healthcare. The data can be used to understand a variety of additional aspects of care including pulmonary, nutrition, mental health, and more.
Deep
The SMA Clinical Data Registry contains detailed SMA-specific data, including genetic information, diagnostic journey, milestones, treatment, and motor function assessments. This allows for specific analyses on outcomes of interest for the SMA community, such as reducing the time to diagnosis or time to first treatment.
Analyzable
All Care Center sites use EMR systems that package data in specific formats, which produces data that is easier to analyze. The data in the SMA Clinical Data Registry allows us to derive results that benefit the SMA community and support the improvement of standards of care.