Should NICE recommend that the NHS funds risdiplam and, if so, who for? Let us know your views

25 September 2020

Based on the clinical and economic data from the manufacturer (Roche), NICE will be considering the clinical and cost effectiveness of risdiplam, and the views of patients and clinicians. We want to be sure to pass on your views to NICE when we make our Patient Group submission in October. NICE plans to publish its decision on 21st July 2021.

More than one person from any family is welcome to submit their views - please would each person complete a separate survey. If there is, or has been, more than one person with 5q SMA (which includes SMA Types 0, 1, 2, 3 and 4) in your family, please complete separate surveys to tell us about each person.

You may find it useful to read summaries about risdiplam and the clinical trials, and refer to these when you complete the survey (please see links below). The survey itself should take around 20 minutes to complete, depending on how much detail you wish to include in your comments. You will need to complete it in one go as the survey doesn't allow for breaks.

Make your voice heard.

The closing date for this survey is 11pm on Sunday 18th October 2020.

Risdiplam summary information

Risdiplam clinical trials summary

Take the survey

If you have any difficulties with completing the survey, or want to ask any further questions or have assistance to complete it, please email or phone 01789 267520. Thank you.