Pádraig O'Sullivan (Cork North-Central, Fianna Fail)
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242. To ask the Minister for Health if she will provide a detailed update on the status of verification testing for spinal muscular atrophy and severe combined immunodeficiency within the national newborn screening programme; when this verification phase is expected to conclude; the remaining steps that must be completed before this routine screening can begin, with particular reference to staffing, equipment and laboratory readiness; and if she will make a statement on the matter. [39819/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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As Minister for Health, I am determined to support our screening programmes, which are a valuable part of our health service, enabling early treatment and care for many people, and improving the overall health of our population. Currently, all babies (between 3 and 5 days old) are offered newborn bloodspot screening (generally known as the ‘heel prick’), which tests for nine rare but serious conditions that are treatable if detected early in life.

I am pleased to note that significant progress continues to be made on the expansion of the National Newborn Bloodspot Screening Programme (NNBSP) to include Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA). However, it is important to note that this expansion is a complex process that requires a rigorous and robust approach to ensure a high-quality service for the population that is aligned to international best practice.

In Budget 2024, an additional €1.4 million of new development funding was provided by my Department to support the SMA/SCID implementation process. In this regard, I am pleased to confirm that 9 of the 12 required additional roles have now been recruited and are in post, with the remaining three posts in the final stages of the recruitment process. Additionally, the new equipment and technology required to commence screening was successfully delivered to the laboratory in June 2025. A first round of training for laboratory staff on the equipment has also been completed.

In terms of next steps, the NNBSP is currently focused on the following:

• Laboratory verification – a complex, multistep process, that involves analytical validation, clinical validation and ongoing quality assurance.
• The development of robust screening and clinical pathways for babies identified with SCID/SMA, in coordination with the relevant clinical teams.
• Updates to relevant programme documentation (policies, procedures, guidelines etc), as well as communications planning.