Development of the Exclusively Electronic & EMR Based Cure SMA Registry


Real World Data - Disease registries, natural history, post marketing surveillance

Poster Number: 169


Jamie Shish, RD, LDN, Adrian Segura, Mary Schroth, MD


1. Cure SMA, 3. Cure SMA

Background: Due to the transformative and impactful treatments available, spinal muscular atrophy (SMA) is changing rapidly. To better understand the changing SMA phenotype and care needs of SMA, Cure SMA designed and developed the first of its kind clinical database sourced directly from SMA care center’s electronic medical records (EMR). This design eliminates the burden of the clinical staff manually entering data into a survey and allows for analysis of clinically objective longitudinal data on the care of patients with SMA. Objective: To create a completely electronic clinical database registry of longitudinal data for persons affected by SMA sourced by transfer of consented EMR data. The objective of the SMA registry data analysis is to create evidence based standards of care for the treatment of persons with SMA. Results: At the time of submission there were 18 care centers contracted for participation in the Cure SMA Care Center Network and Registry with 12 centers sending EMR data to the Cure SMA Registry. The Cure SMA registry successfully receives data from Cerner, Allscripts, and EPIC EMR’s using both Fast Healthcare Interoperability Resource (FHIR) and Consolidated Clinical Data Architecture (CCDA) submission methods. The registry includes longitudinal records on 186 patients at the time of submission and continues to expand. Conclusions: Cure SMA created a live Clinical Data Registry sourced directly from SMA care center’s electronic medical records of clinical patient data of persons affected by SMA.