Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, with reference to the APPG for Muscular Dystrophy report entitled Newborn Screening for Rare Conditions, published May 2023, what assessment he has made for the implications for his policies of the recommendation that when conditions previously rejected for newborn screening are reassessed, there should be a clear expedited process that demonstrates how gaps will be filled rather than restarting a review process each time.

The UK National Screening Committee (UK NSC) has published its evidence review process, which is available at the following link:

https://www.gov.uk/government/publications/uk-nsc-evidence-review-process/uk-nsc-evidence-review-process

As outlined in the process, an evidence map is commissioned first. This process deliberately builds on previous evidence and does not start again. This evidence map draws on uncertainties identified from the previous review to identify whether there has been any advancement in the evidence base for that topic before a more significant review is commissioned. The final evidence product (a map or a review) draws attention to the gaps in the evidence that mean the UK NSC cannot confidently recommend screening.

The UK NSC’s process using an evidence map is similar to a process used by the National Institute for Health and Care Excellence.