Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 2 December 2025 to Question 93697, what the average time taken was by the UK National Screening Committee to evaluate proposals for additions to the newborn screening programme; and what steps he is taking to reduce the time taken for decision-making on rare disease screening.

The process from a proposal to screen newborns for a condition, to a decision whether to roll out a national screening programme is multi staged, and the time taken will vary from one condition to the next. This includes procuring evidence products, securing funding, decision on whether to proceed to another evidence product, modelling if required, and evaluation in the National Health Service if needed.

The time for assessment depends entirely on the amount of evidence available and the ability of the screening team to commission and receive evidence reviews. A routine assessment for screening for a new bloodspot condition can take anything from a few months from an open call request to a published evidence map through to one to two years if there is evidence and modelling is required.

A recent example is the implementation of screening for tyrosinaemia in the NHS Newborn Blood Spot Screening Programme, where work began over five years ago. Another example is newborn screening for spinal muscular atrophy where planning for an in-service evaluation is ongoing, and the first evidence review was over seven years ago.

The United Kingdom is not an outlier in terms of the time between first consideration of a proposal to roll out of a programme. France and The Netherlands are estimated to take approximately 10 years.

Reviewing the case for screening for rare conditions can be difficult due to a lack of good quality evidence. The UK National Screening Committee has started to use disease, clinical effectiveness and cost effectiveness modelling to estimate the effects of screening and inform its recommendations, including its recent recommendation to introduce newborn screening for tyrosinaemia.