To ask the Secretary of State for Health whether he has considered introducing a screening programme for patients with (a) severe combined imunodeficiency and (b) other rare diseases.
The UK National Screening Committee (UK NSC) advises Ministers and the national health service in all four countries about all aspects of screening policy and supports implementation. Using research evidence, pilot programmes and economic evaluation, it assesses the evidence for programmes against a set of internationally recognised criteria.
The UK NSC is currently reviewing the evidence for newborn screening for severe combined immunodeficiency against its criteria. A public consultation on the screening review has just closed and Ministers expect to receive a recommendation from the UK NSC shortly.
As part of the NHS Newborn Bloodspot Screening Programme in England all newborn babies are offered screening for phenylketonuria, congenital hypothyroidism, sickle cell anaemia, cystic fibrosis and medium-chain acyl-CoA dehydrogenase deficiency.
Where stakeholder organisations or individuals feel that there is enough evidence published in peer reviewed journals to consider screening for other rare conditions they can submit a policy proposal to the UK NSC. Further information is available on the UK NSC's website at: