Written answers

Thursday, 29 June 2023

Photo of Gino KennyGino Kenny (Dublin Mid West, People Before Profit Alliance)
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411. To ask the Minister for Health the progress he is making on expanding the national heel-prick test; how many diseases babies born today in Ireland are currently being tested for; when he will decide on including spinal muscular atrophy in newborn screening (details supplied); and if he will make a statement on the matter. [31721/23]

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
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The expansion of the National Newborn Bloodspot (NBS) Programme is a priority for me, and the National Screening Advisory Committee (NSAC) has been progressing work on this expansion.

This independent expert group considers and assesses evidence in a robust and transparent manner, and against internationally accepted criteria. It is important we have rigorous processes in place to ensure our screening programmes are effective, quality assured and operating to safe standards, and that the benefits of screening outweigh the harms. As you will appreciate, these are lengthy and complex processes.

However, I am glad to note that significant progress has been made on expansion over the past year. Since May 2022, babies are now screened for nine conditions following a recommendation from the NSAC to add ADA-SCID to the Programme.

In January 2023, I approved a recommendation from the Committee for the addition of T-cell receptor excision circle (TREC)-based screening for all types of Severe Combined Immunodeficiency (SCID) to the NBS programme. The Committee made its recommendation to me based on their consideration of a comprehensive Health Technology Assessment report from HIQA.

The HSE is now undertaking an extensive body of work to prepare for implementation. Provision for this addition will be included in the relevant HSE service planning processes in line with HSE budgeting procedures.

A Health Technology Assessment (HTA) on the addition of an eleventh condition to the NBS programme, Spinal Muscular Atrophy, is now underway by HIQA. I am advised that the NSAC expect HIQA to complete this process over the coming months and that the HTA will be presented to and considered by the Committee at a meeting before the end of this year.

I look forward to receiving a recommendation from the Committee following their consideration of the HTA once it is available.

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