Question 1

Can I submit a proposal for newborn screening for a disease at any time?

Accepted Answer

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

Question 2

Can anyone submit a proposal for newborn screening for a disorder?

Accepted Answer

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

Question 3

How do I find out what evidence I will require to submit a proposal and what steps I will have to follow?

Accepted Answer

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.

https://www.gov.uk/government/publications/uk-nsc-evidence-review-process/uk-nsc-evidence-review-process

Question 4

Do the UK NSC engage with the public or patient organisations?

Accepted Answer

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.

https://www.gov.uk/government/publications/uk-nsc-stakeholder-engagement/uk-nsc-stakeholder-engagement-strategy-2022-to-2024

Question 5

Can I get more information and help from patient organisations who have been through the submission process and understand some of the challenges?

Accepted Answer

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

Question 6

Why do the public, patient organisations or medical professionals have to make the submission. Are the UK NSC not looking at developments in medicine or treatment approvals by NICE. Why do they not handle all submissions?

Accepted Answer

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.

https://www.gov.uk/government/publications/uk-nsc-approach-to-horizon-scanning/uk-nsc-horizon-scanning

Question 7

How can I get involved in supporting expanded newborn screening?

Accepted Answer

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!

Frequently asked questions