Written question WQ100799
- Asked by
- Jason O'ConnellReform
- To be answered by
- Cabinet Minister for Health and Care
- Tabled
- Due
- Answered
- Time to answer
- 8 days
Question
What assessment has the Welsh Government made of the clinical benefits, costs and feasibility of introducing newborn screening for spinal muscular atrophy in Wales?
Answer
Answered by Deputy Minister for Public and Preventative Health (Nerys Evans)
The Welsh Government takes advice on the introduction of new screening programmes from the UK National Screening Committee (UK NSC).
Spinal Muscular Atrophy (SMA) is a rare condition, affecting around 1 in every 10,000 live births. The UK National Screening Committee (UK NSC) does notcurrently recommend routine population screening for SMA through the newborn bloodspot programme. While England and Scotland are currently participating in the evaluation, a final UK NSC recommendation has not yet been made.
Wales is not currently participating in the SMA in-service evaluation because improvements to infrastructure are required within the Newborn Bloodspot Screening Wales Programme. These are required before additional conditions can be safely introduced and enable us to respond to future newborn screening developments and recommendations from UK National Screening Committee. We expect to receive advice on the proposals during the next few weeks.
Officials are engaged with counterparts in England and Scotland on learning from the evaluation. We are also engaging with SMA UK, Muscular Dystrophy UK and people with lived experience to better understand their perspectives as we consider the future development of newborn screening services in Wales.