Réada Cronin
Question:260. Deputy Réada Cronin asked the Minister for Health if a test for neurofibromatosis specifically can be added to the newborn screening system; and if he will make a statement on the matter. [19932/24]
View answerThursday, 2 May 2024
Questions (260)
Written answers
The expansion of the National Newborn Bloodspot Screening (NBS) Programme continues to remain a priority of mine as Minister for Health, and I am pleased to note that progress continues to be made in this regard.
Significant progress has been made on the expansion of the NBS Programme since I became Minister for Health. As the Deputy will be aware, last year I approved recommendations from the National Screening Advisory Committee (NSAC) for the addition of Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA) to the NBS programme, which will bring the number of conditions screened for in Ireland to 11, once the implemented. I would highlight that this will represent a 37% increase achieved under the lifetime of this Government.
The NSAC is an independent expert group that considers and assesses evidence in a robust and transparent manner, and against internationally accepted criteria. Its role is crucial in ensuring that Ireland has 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.
NSAC is conscious of the constantly changing landscape regarding screening and holds regular Calls for Submissions, which invite all stakeholders, including members of the public, HSE and other medical professionals, to make proposals for the introduction of new population-based screening programmes or changes to existing programmes in Ireland. The third and most recent Call for Submissions closed on 1 March 2024. I have been informed that the Committee has not previously received a proposal to add neurofibromatosis to the NBS Programme but that they would welcome such an application through the next Call for Submissions. All submissions are carefully considered by the Committee as per its work programme.
I am acutely aware of how difficult it is for parents, families and children who have received a diagnosis of a rare disease, and how challenging daily life can be for them. This is why I remain committed to the further expansion of screening in Ireland in accordance with internationally accepted criteria and best practice.