Sickle cell and thalassaemia screening supporting information
Updated 10 October 2024
Applies to England
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Introduction
These revised screening standards for the NHS sickle cell and thalassaemia (SCT) screening programme replace previous versions. They apply to data collected from 1 April 2018 unless stated otherwise in the document.
The UK National Screening Committee (UK NSC) recommends all eligible pregnant women in England are offered screening for sickle cell and thalassaemia and all newborn babies are offered screening for sickle cell disease as part of the newborn blood spot screening programme.
We aim to make sure there is equal access to uniform and quality assured screening across England and that women are provided with high quality information so they can make an informed choice about their screening options and pregnancy choices.
These documents may link to a central glossary of terms, NHS population screening explained and NHS.UK for definitions of terms. If you would like to see the meaning of an acronym, hover over it with your cursor and you will be able to see the full definition.
Summary of changes from previous version of standards
SCT-S01: coverage: antenatal screening
Updated to reflect key performance indicator ST1.
SCT-S03: test: completion of family origin questionnaire (FOQ)
Updated to reflect key performance indicator ST3.
SCT-S05: referral: timely offer of prenatal diagnosis (PND) to women at risk of having an infant with sickle cell disease or thalassaemia
Updated to reflect key performance indicator ST4.
SCT-S02: test: timeliness of antenatal screening
Updated to reflect the key performance indicator ST2 and clarify the meaning of ‘test’ - which describes the generation of a result rather than the taking of a sample.
SCT-S09: intervention or treatment: timely follow-up, diagnosis and treatment of newborn infants with a positive screening result
Updated to:
- include insignificant cases that do not get as far as the medical centre (clarified in title and definition)
- explain in the rationale that to meet the standard both significant and insignificant results must be followed up
- include in the definition ‘Infants born outside of England are excluded from this standard’
- highlight within the responsible for submission section that the newborn outcomes system will be used in future
Pathway themes
NHS SCT screening standards look at 5 themes to assess the pathway and 4 key performance indicators (KPIs) are derived from standards 1, 2, 3 and 5.
Theme: coverage
The related standard is SCT-S01: coverage: antenatal screening
Theme: test
The related standards are:
SCT-S02: test: timeliness of antenatal screening
SCT-S03: test: completion of family origin questionnaire (FOQ)
SCT-S04: test: turnaround time (antenatal screening)
SCT-S07: test: timely reporting of prenatal diagnosis (PND) results to parents
SCT-S08: test: reporting newborn screen positive results to parents
Theme: referral
The related standard is SCT-S05: referral: timely offer of prenatal diagnosis (PND) to women at risk of having an infant with sickle cell disease or thalassaemia
Theme: diagnosis or intervention
The related standard is SCT-S06: diagnosis or intervention: timeliness of prenatal diagnosis (PND)
Theme: intervention or treatment
The related standard is SCT-S09: intervention or treatment: timely follow-up, diagnosis and treatment of newborn infants with a positive screening result
Resources to support providers and commissioners
Additional guidance is included in the:
Reporting and publishing
Annual standards reports and quarterly KPI data are published. We share the data with NHS England before publication.
Services can also access the quarterly KPI submission templates.