NICE has begun the process to review data collected as part of the Managed Access Agreement (MAA) for nusinersen. Specifically, it will consider whether people who have SMA Type 3 who are unable to walk can benefit from the treatment and therefore should be included in the MAA. NICE expects to publish a final decision in 6 months.
NHS England and the Neuromuscular Centres need to be ready for the possibility of a positive recommendation for change. As it's important that everyone who might be eligible is contacted, SMA UK has agreed to put out this brief survey via the Patient Groups, even though a positive recommendation may not be made. Whether you are known or not to a Centre, please let us know if you would want nusinersen treatment so that we can pass this information on to help with service planning.
Please note your response to this survey is not a referral for individual treatment, which must be via a medical team. If the outcome of the review does recommend a change in the MAA, other eligibility /starting criteria will still be in place and you will need to be assessed by a medical team at one of the specialist neuromuscular treatment centres.
Your response to this survey will help link you with NHS England and the Neuromuscular Centre(s) that would provide this service if it is recommended, but it does not commit you to any decisions or preferences you express – you will be able to change your mind.
SMA UK will collate all responses to this survey and share the information with NHS England and the Neuromuscular Centres.
You will be asked at the end of the survey what information you consent to being shared.
It should take around 5 - 10 minutes to complete.
The closing date for this survey is Sunday 13th December 2020.