Cure SMA Care Center Network and Clinical Data Registry

Project: Research project

Project Details


A clinical data registry (CDR) for individuals with spinal muscular atrophy will be developed to collect clinician entered data via electronic data transfer from the electronic health record, an external database or electronic case report form entry from multiple centers caring for patients with SMA. This clinical data registry will be for the collection and storage of data that can be used for a variety of activities including research and quality improvement.
Effective start/end date6/1/226/30/23


  • Families of Spinal Muscular Atrophy (SMA AGMT 5-31-22)


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