Spinal Muscular Atrophy added to National Newborn Bloodspot Screening Programme

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Minister for Health, Stephen Donnelly TD has asked the (HSE) to add Spinal Muscular Atrophy (SMA) to the National Newborn Bloodspot Screening Programme. The move follows a recommendation from the National Screening Advisory Committee (NSAC).

The National Newborn Bloodspot Screening (NBS) Programme is operated by the HSE and focuses on the early identification of serious medical conditions in babies along with appropriate interventions to reduce mortality and/or morbidity.

Minister Donnelly said, “Expansion of newborn screening remains a priority for me as Minister and indeed this Government. I am pleased to approve the recommendation received from the National Screening Advisory Committee to add Spinal Muscular Atrophy to the National Newborn Bloodspot Screening (NBS) Programme.  As Minister, I understand the impact these rare but serious conditions have on children and their families. Screening is one step which can significantly improve the outcomes for children and is why I have been consistent in my support for expanding the National Newborn Bloodspot Screening Programme since assuming office.

“I would like to thank the members of the Committee for their consideration of the evidence contained in a comprehensive Health Technology Assessment, produced by HIQA. These considerations included balancing a range of complex factors in reaching a recommendation.

“I have written to the HSE, requesting that they commence implementation planning for the introduction of SMA into the NBS programme. This process will require a number of important steps being taken and will take some time to undertake in order to ensure that once introduced, screening for SMA will be underpinned by robust quality assurance systems and structures.

“I look forward to progress being made and seeing the introduction of SMA into the NBS programme in 2024.”

NSAC will launch its third Annual Call before the end of 2023, inviting members of the public and health professionals to make submissions on screening programmes in Ireland. Details on how to submit a proposal will be made available on its website shortly.