Planning for Access to Nusinersen – Survey of Adults, What Next

26 March 2020

We had 145 responses from adults in the community - thank you to all of you. Thanks also to MDUK and TreatSMA for helping to get the survey out to you all. You can see the ‘top line’ results here. We have forwarded summary information about who has asked for contact to the adult treatment centre network lead clinician. If you gave any personal details but asked for these not to be shared, these have not and will not be passed on.

The next step is to send the actual responses to the appropriate Centre (with the same confidentiality criteria as above). Clearly all these Centres are now focused on care of patients affected by Covid-19 and any urgent care needs of people who have neuromuscular conditions as their top priority. We will update you as soon as we are able to forward the more detailed information you have given us to the relevant Centres.