Frequently asked questions
The UK National Screening Committee (UK NSC) issue an annual invitation for submissions and proposals for newborn screening. The cutoff date each year for receipt of submissions is announced on their website. There is a 3 month period between the announcement and the cutoff date.
https://www.gov.uk/government/organisations/uk-national-screening-committee
Yes, in practice anyone can submit a proposal. There is an initial submission form to complete. However it is recommended that your application has the support of expert clinicians, scientists or other health professionals to allow full consideration by the UK NSC. Information on submitting a proposal, together with the form is on the UK NSC website.
https://www.gov.uk/government/publications/uk-nsc-annual-call-submitting-a-screening-proposal
A publication ‘the Evidence Review Process’ can be found on the UK NSC website. This publication described how the UK NSC reviews evidence relating to proposals to introduce, modify or cease screening proposals. It is important to understand the process when you are considering making a proposal.
The UK NSC has published a Stakeholder Engagement Strategy. This currently covers 2022-2024, however it is likely that this will be updated for 2025 onwards.
It is suggested that if you are considering submitting a proposal for newborn screening that you contact the UK NSC to discuss your proposal in advance. The UK NSC has an administration team who deal with queries.
Yes you can. A number of the members of the UK NBS Collaborative have made submissions and have been through the process. If you wish to contact someone for advice please send an e mail to contact@archangel.org.uk
The UK NSC are looking at all screening programmes, not just newborn screening. They do flag on their website that they are involved in looking for new opportunities (horizon scanning), however in the main it is the patient organisations or health professionals who have the understanding of the disease and the relevant information to support a proposal. If you need to understand a little more on the UK NSC approach to horizon scanning you can find it on the link below.
There are several ways to support the cause, from signing petitions and sharing campaign videos to making a donation or volunteering. As a rare disease organisation you can also help by raising awareness about the importance of newborn screening, advocating for policy changes to expand the programme, and of course joining the Collaborative!