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Table 1 SMA patient registries

From: SMA-EUROPE workshop report: opportunities and challenges in developing clinical trials for spinal muscular atrophy in Europe

Database information Families of SMA International IU FSMA Registry MDA Treat-NMD Estimated
Number of patients 11,000 3,000 5,500 2,400  
SMA subtypes (%) I* 51 I 28 I 19.1 I 20 I 60
  II* 24 II 33.5 II 35.4 II 43 II 30
  III* 12 III 26 III 28.8 III 37 III 10
  IV/Unknown* 13   IV 16.7   
Average age of diagnosis (months) I 4.9     
II 18.7
Average age at entry into registry (months) I 6     
II 20
  1. *Calculated from approximately 1,000 newly diagnosed patients contacting FSMA over the previous three-year period (Courtesy of Families of SMA).