Opportunity to let NICE hear your views about the impact of 5q SMA and who should be able to access nusinersen

Please do read all the following options through carefully before you start so that you know which one(s) to complete. Each survey should take about 10 – 20 minutes to complete and needs to be completed in one go. The surveys don’t allow for breaks and should only be completed by people living in England.

Surveys A - E are for those who have not been treated with nuinersen

Survey F (see bottom of the page) is for those who have been treated with nusinersen



Survey A - This may only be completed once for each person with 5q SMA who has not been treated with nusinersen. It may be completed either by the person with 5q SMA or by the parent / carer or by both together. When collated this will give a picture of how many people there are with 5q SMA and information about their health.

(People who complete this may also want to complete survey B or C below to give their views about the impact SMA has on their lives and what they think about access to nusinersen.)

www.surveymonkey.co.uk/r/SurveyAforNICE

Surveys B – E are designed to find out what impact SMA has on the lives of people who have not been treated with nusinersen and what they think about access to the treatment. Please complete the one that describes you:

Survey B – As a person with 5q SMA who has not had nusinersen treatment, what impact do you feel your 5q SMA has? What do you think about access to nusinersen?

www.surveymonkey.co.uk/r/SurveyBforNICE

Survey C – As the main unpaid carer / unpaid personal assistant (e.g. parent, partner) supporting a person with 5q SMA who has not had nusinersen treatment, what impact do you feel their 5q SMA has? What do you think about access to nusinersen?

If you support / care for more than one person with SMA in your family, please complete a survey for each person.

www.surveymonkey.co.uk/r/SurveyCforNICE

Survey D – As a relative of someone with 5q SMA who has not had nusinersen treatment, what impact do you feel their 5q SMA has? What do you think about access to nusinersen?

If you are related to more than one person with 5q SMA in your family, please complete a survey for each person.

www.surveymonkey.co.uk/r/SurveyDforNICE

Survey E – As someone who has been bereaved by 5q SMA and whose family member was not treated with nusinersen, what are your views on the impact of 5q SMA. What do you think about access to nusinersen?

www.surveymonkey.co.uk/r/SurveyEforNICE

Survey F – As a parent / main carer of a child who has been treated with nusinersen, including bereaved parents, what are your views on the impact of 5q SMA. What do you think about access to nusinersen?

www.surveymonkey.co.uk/r/SurveyFforNICE