Newborn babies to be tested for Spinal Muscular Atrophy from next year – a victory for our community!

We are really pleased to share the good news that Spinal Muscular Atrophy (SMA) has been approved for inclusion in Ireland's National Newborn Bloodspot Screening Programme, commonly known as the heel prick test. Approval of SMA is a massive milestone for the community and overall progress of newborn screening in Ireland. It is particularly valuable because new treatments have become available for SMA in recent years with the potential to significantly improve outcomes through earlier diagnosis and treatment.

MDI, in partnership with SMA Ireland and Rare Diseases Ireland, has been advocating for some time for the addition of SMA to the National Newborn Bloodspot Screening programme. This has included researching options for a national pilot heel prick study, consulting with pharmaceutical companies who supply treatment options for SMA, companies who provide testing kits for SMA, the laboratory in Children’s Health Ireland (CHI) at Temple Street and clinicians.

The process will take some time to undertake to ensure that, once introduced, screening for SMA will be underpinned by robust quality assurance systems and structures.

We will continue to help steer its progress alongside our partners until the screening is fully implemented and rolled out. We share a vision that newborn babies in Ireland will have access to SMA screening and life-changing treatments in a timely manner.

Read the HSE press release here 

Find out more about SMA here