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Table 7 Reasons why POs where in favour of screening

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

Rank Shorter time to diagnostic Early access to treatments Inclusion in clinical trials Preventive care Genetic counselling
1 13 (50%) 18 (69%) 8 (33%) 11 (44%) 13 (48%)
2 7 (27%) 5 (19%) 6 (25%) 9 (36%) 7 (26%)
3 3 (12%) 1 (4%) 4 (17%) 3 (12%) 4 (15%)
4 2 (8%) 2 (8%) 0 2 (8%) 2 (7%)
5 1 (4%) 0 5 (21%) 0 1 (4%)
6 0 0 1 (4%) 0 0
  1. Aggregated results for all patients’ organisations (n = 28). 1 = most important, 6 = least important