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

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

	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

“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)

ISSN: 1750-1172