Your views on introducing newborn screening for SMA in the UK

When we submit our response to the National Screening consultation in September 2018, we would like to represent views from the SMA community about screening newborns for SMA.

Clinical trial results for nusinersen treatment indicate that the best outcomes are achieved when children are treated pre-symptomatically. The earlier the treatment is started, the greater the potential for a positive outcome. It’s likely that this will be the case for future similar treatments.

This short survey asks for your views on whether, in view of this, a UK newborn dried blood spot (DBS) screening programme to detect SMA, with a subsequent diagnostic test required for confirmation in all cases, should be set up.  If you haven’t already read the national screening consultation paper discussion on this option, you can read a summary here

We will collate all the surveys and summarise what we have been told. The anonymised statistical results of this survey will be used to inform our Submission to the National Screening Consultation.We would also like to be able to quote what people have told us. If you agree to this, we will not tell anyone your name or contact details but may include information such as 'parent affected by SMA Type 1'. You will be asked at the end of the survey whether you consent to this. 

The survey should take between 5 - 15 minutes to complete, depending on how much detail you wish to include in your comments.  
The closing date for this survey is  27th August 2018.  
Thank you.