It is unethical to delay the introduction of SMA newborn screening to the UK. We are calling for three urgent changes to the UK NSC’s approach to SMA:
• Timescales – we ask the UK NSC to commit to complete its review of newborn bloodspot screening for SMA at the earliest opportunity, with clarity on the key evaluation milestones needed to reach that deadline.
• Engagement – we ask the UK NSC to take a more transparent and collaborative approach to engagement with the SMA expert clinical and patient community.
• Evidence – We ask the UK NSC to adopt a streamlined and pragmatic approach to evidence assessment for SMA, to reduce the chance of further unnecessary delays.
We are pleased to share this webinar, summarising the work being of the UK SMA Newborn Screening Alliance.
Unfortunately, the Parliamentary Drop-in event that is mentioned in this webinar had to be cancelled due to unforeseen circumstances.
