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Table 2 The types of information participants would like to receive from doctors and researchers, the amount of information they currently receive and overall satisfaction with communication (n = 40)

From: Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan

  Receive information Communication with doctor
All or some Little or none p-value Satisfied Dissatisfied p-value
n (%) n (%) n (%) n (%)
Types of information
Disease (general) 8 (62) 5 (38) 0.390 12 (92) 1 (8) 0.058
Symptoms 8 (42) 11 (58)   14 (74) 5 (26)  
Treatments 9 (41) 13 (59)   16 (76) 5 (24)  
Prognosis 7 (28) 18 (72)   17 (74) 6 (26)  
Other patients 6 (46) 7 (54)   11 (85) 2 (15)  
Medical research (findings) 11 (35) 20 (65)   19 (68) 9 (32)  
Medical research (participating) 10 (43) 13 (57)   13 (62) 8 (38)