UK NSC Review of SMA Has Commenced!

The Alliance is delighted that the UK National Screening Committee (UK NSC) review of spinal muscular atrophy (SMA) for the UK newborn screening programme has commenced.

When SMA was first assessed for newborn screening in 2018, the UK NSC did not feel that there was sufficient evidence to support a positive recommendation and the decision was made not to screen routinely for SMA.

However, a lot has changed since 2018. The NHS has revolutionised treatments for SMA and a newborn screening pilot is underway in the Thames Valley. There is also greater understanding of what is required operationally to screen for SMA due to a large-scale pilot having been run for another group of rare conditions called severe combined immunodeficiency disorders (SCID), which uses the same testing equipment as SMA.

We are hopeful that when the new evidence to support newborn screening for SMA is reviewed, the UK NSC will be in a position to recommend that newborns in the UK are screened for SMA via the existing heel prick test.

The Alliance looks forward to working with the UK NSC to ensure that a positive decision on newborn screening for SMA is made in the fastest possible timeframe.

Further information on the review can be found on the UK NSC blog here.