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Table 5 How to screen: answers from POs by the pathologies they represented

From: Survey on patients’ organisations’ knowledge and position paper on screening for inherited neuromuscular diseases in Europe

  DMD SMA NMD OTHER TOTAL
Systematic with the option to opt-out 5 (83%) 5 (100%) 7 (58%) 4 (80%) 21
Systematic 1 (17%) 0 3 (25%) 0 4
Not systematic with the possibility to opt-in 0 0 2 (17%) 1 (20%) 3
  1. “DMD” stands for DMD/BMD patients’ organisations (n = 6), “SMA” for SMA POs (n = 5), “NMD” for all neuromuscular diseases POs (n = 12), “Other” for other neuromuscular diseases specific POs (n = 5)