Invitation to parents/main carers in the UK whose children have received nuisnersen treatment to voice your views
19 December 2017
As so few children have received the treatment nusinersen, the Scottish Medicines Consortium (SMC) has advised that the views of families whose child has received nusinersen, within or outside Scotland, may be helpful.
We have set up a short survey which we hope will provide you with a suitable framework for letting us know about your experiences.
The survey does not seek to gather any clinical measures or evidence but asks you about the physical, practical and emotional impact of your child receiving nusinersen.
Closing date to complete the survey is Friday 12th January.