Feedback from participants in a clinical trial in SMA was collected through a survey conducted by the American association Cure SMA. Analysis of the results of 70 questionnaires showed :
- a positive experience of participating in a clinical trial by patients,
- motivational factors related to the accessibility of a drug, potential clinical benefit, help for other patients…
- stress factors based on fear of pain, side effects, management of complications…
- the main guideline is to receive more information.
