Transparency data

2021 annual call topic proposals

Published 20 May 2024

The UK NSC received 4 proposals in 2021:

1. Metachromatic leukodystrophy (MLD)

UK NSC decision: commission more work and add MLD to list of conditions the committee regularly reviews

The UK NSC received a proposal for the introduction of newborn screening for MLD and the evaluation group agreed it fell within the UK NSC remit.

An evidence map was commissioned and its findings were promising. The evidence map recommended further work:

  • to evaluate all available screening strategies
  • to look in more depth at evidence related to the benefits and/or harms of treatments in presymptomatic patients with MLD
  • on the question of cost-effectiveness

Chair’s action was taken to prevent delay to this further work and MLD will be added to the UK NSC’s recommendation list kept under regular review.

2. Anorectal malformations

UK NSC decision: evidence map commissioned, no further work

The UK NSC received a proposal to add anorectal malformations (ARMs) to the newborn and infant physical examination screening programme.

The evaluation group agreed that the topic fell within the remit of the UK NSC and an evidence map was commissioned.

The evidence map found no suitable studies that reported a screening test used to triage consecutive or randomly selected populations of all newborns and/or infants for ARMs.

Both the fetal, maternal and child health (FMCH) group and the UK NSC noted the findings of the evidence map for ARMs and agreed no further work should be commissioned at this time.

3. Neonatal diabetes

UK NSC decision: evidence map commissioned, no further work

The UK NSC received a proposal to screen for neonatal diabetes (NDM) in newborns.

The evaluation group agreed that the topic fell within the remit of the UK NSC and an evidence map was commissioned.

The evidence map concluded that the volume and type of evidence related to screening for NDM was insufficient to justify an evidence summary and no further work on screening for NDM should be commissioned at this time.

4. Craniosynostosis

UK NSC decision: evidence map commissioned, no further work

The UK NSC received a proposal to screen for craniosynostosis as part of the Newborn and Infant Physical Examination (NIPE) population screening programme.

The evaluation group agreed that the topic fell within the remit of the UK NSC and an evidence map was commissioned.

The evidence map concluded that the volume and type of evidence related to screening for craniosynostosis was insufficient to justify an evidence summary and no further work on screening for craniosynostosis should be commissioned at this time.