Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether the UK National Screening Committee has had recent discussions with (a) patient organisations, (b) patients and (c) families affected by spinal muscular atrophy (SMA) as part of its review of incorporating SMA within the NHS newborn screening programme.

As part of the UK National Screening Committee’s (UK NSC) work to review newborn screening for Spinal Muscular Atrophy (SMA), the UK NSC secretariat has held multiple stakeholder engagement activities where stakeholders have helped formulate evidence work.

The UK NSC last met with the SMA Alliance earlier in July and responded recently to correspondence about screening for SMA. The UK NSC will continue to actively engage with patient organisations and provide updates as far as is possible within the bounds of the published process of the UK NSC as an independent scientific advisory committee.