Newborn blood spot screening supporting information
Updated 8 October 2024
Applies to England
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This publication is available at https://www.gov.uk/government/publications/standards-for-nhs-newborn-blood-spot-screening/newborn-blood-spot-screening-supporting-information
Introduction
These revised screening standards for the NHS newborn blood spot screening programme (NBS) replace previous versions.
They apply to data collected from 1 April 2020 unless stated otherwise in the document. They should be read in conjunction with the standards for the NHS sickle cell and thalassaemia screening programme.
The UK National Screening Committee (UK NSC) recommends all babies are offered screening for the following 9 conditions:
- Sickle cell disease (SCD)
- Cystic fibrosis (CF)
- Congenital hypothyroidism (CHT)
- Phenylketonuria (PKU)
- Medium-chain acyl-CoA dehydrogenase deficiency (MCADD)
- Maple syrup urine disease (MSUD)
- Isovaleric acidaemia (IVA)
- Glutaric aciduria type 1 (GA1)
- Homocystinuria (pyridoxine unresponsive) (HCU)
NBS screening is offered to all babies under a year of age (up to but not including their first birthday). For the small number of babies affected, early detection, referral and treatment can help to improve their health and prevent severe disability or even death. Parents can also receive support and education about their child’s condition.
The NHS NBS programme has responsibility for implementing this policy. It is a complex programme delivered by a range of different organisations working together. The service specification (No. 19) for providers is available as part of the public health functions exercised by NHS England.
We aim to make sure there is equal access to uniform and quality assured screening across England and that families are provided with high quality information so they can make an informed choice about NBS screening.
Screening guidance documents may link to a central glossary of terms, NHS population screening explained and NHS UK for definition of terms. To see the meaning of an acronym, hover over it with your cursor for the full definition.
Summary of changes from previous version of standards
NBS-S01a: coverage of CCG responsibility at birth
The definitions for NBS-S01a and key performance indicator (KPI) NB1 are now the same.
Data collection is through KPI NB1 only. Quarterly KPI data will be aggregated to give annual data for NBS-S01a.
Data measures coverage of PKU only. Reference to PKU acting as a proxy for the other conditions has been removed.
Decline data will be collected to help interpret coverage data.
NBS-S01b: coverage of movers in
The definitions for NBS-S01b and KPI NB4 are now the same.
Data collection is through KPI NB4 only. Quarterly KPI data will be aggregated to give annual data for NBS-S01b.
Data measures coverage of PKU only. Reference to PKU acting as a proxy for the other conditions has been removed.
Decline data will be collected to help interpret coverage data.
The denominator no longer includes the requirement for babies to have a blood spot sample taken before their first birthday. A new caveat reflects the revised policy on movers in with no available records.
NBS-S02: coverage: timely identification of babies with a null or incomplete result recorded on the CHISS
No change.
NBS-S03: test: barcoded NHS number label is included on the blood spot card
Change to numerator to number of blood spot cards received by the laboratory with the baby’s NHS number on a barcoded label that scans successfully in the laboratory.
NBS-S04: test: timely sample collection.
Clarified caveat on babies that have a sample taken on days 6 to 8 due to transfusions. These babies should still be included in the denominator.
NBS-S05: test: timely receipt of a sample in the newborn screening laboratory
New caveat. Samples may arrive in the laboratory after the batch preparations for that day have been completed. As a result, these samples may be recorded in the laboratory information management system on the following day.
NBS-S06: test: quality of the blood spot sample
Minor changes to definition to reflect wording used in education and training resources on blood spot quality.
NBS-S07a: test: timely taking of a second blood spot sample for CF screening
The 2017 definition of the standard will still be available within the 1 April 2020 standards, but will not be subject to review by the screening quality assurance service (SQAS) or the screening and immunisation teams (SITs).
In September 2020, a working group updated the definition which is valid for data collected from 1 April 2021.
NBS-S07b: test: timely taking of a second blood spot sample following a borderline CHT screening
The 2017 definition of the standard will still be available within the 1 April 2020 standards, but will not be subject to review by the screening quality assurance service (SQAS) or the screening and immunisation teams (SITs).
In September 2020, a working group updated the definition which is valid for data collected from 1 April 2021.
NBS-S07c: test: timely taking of a second blood spot sample for CHT screening for preterm infant
The 2017 definition of the standard will still be available within the 1 April 2020 standards, but will not be subject to review by the screening quality assurance service (SQAS) or the screening and immunisation teams (SITs).
In September 2020, a working group updated the definition which is valid for data collected from 1 April 2021.
NBS-S09: referral: timely processing of CHT and IMD (excluding HCU) screen positive samples
Updated rationale. Added detail to description. Split definition into 3 groups to account for differences in pattern of working days for the time-critical conditions.
NBS-S11: intervention or treatment: timely entry into clinical care
Removed sickle cell disease. Added link to sickle cell and thalassemia screening programme standards.
NBS-S12a: test: timeliness of results to parents for CCG responsibility at birth
Reworded to focus on babies, not letters or results.
Removed exclusion relating to babies that have repeats.
Thresholds revised to:
- acceptable level: greater than or equal to 99.0%
- achievable level: greater than or equal to 99.5%
NBS-S12b: test: timeliness of results to parents for movers in
Reworded to focus on babies, not letters or results.
Removed exclusion relating to babies that have repeats.
Thresholds revised to:
- acceptable level: greater than or equal to 99.0%
- achievable level: greater than or equal to 99.5%
Previous standard 8: test: UKAS (screening)
Laboratory accreditation will not be monitored through the screening standards. The programme is working with SQAS to establish an appropriate reporting mechanism.
Previous standard 10: diagnosis or intervention: UKAS (diagnosis)
Laboratory accreditation will not be monitored through the screening standards. The programme is working with SQAS to establish an appropriate reporting mechanism.
Pathway themes
NHS NBS screening standards look at 4 themes to assess the pathway and 3 KPIs are derived from standards NBS-S01a, NBS-S01b and NBS-S06.
Theme: coverage
Related standards are:
NBS-S01a: coverage of CCG responsibility at birth
NBS-S01b: coverage of movers in
NBS-S02: coverage: timely identification of babies with a null or incomplete result recorded on the CHIS
Theme: test
Related standards are:
NBS-S03: test: barcoded NHS number label is included on the blood spot card
NBS-S04: test: timely sample collection
NBS-S05: test: timely receipt of a sample in the newborn screening laboratory
NBS-S06: test: quality of the blood spot sample
NBS-S07a: test: timely taking of a second blood spot sample for CF screening
NBS-S07b: test: timely taking of a second blood spot sample following a borderline CHT screening
NBS-S07c: test: timely taking of a second blood spot sample for CHT screening for preterm infants
NBS-S12a: test: timeliness of results to parents for CCG responsibility at birth
NBS-S12b: test: timeliness of results to parents for movers in
Theme: referral
Related standard is:
NBS-S09: referral: timely processing of CHT and IMD (excluding HCU) screen positive samples
Theme: intervention or treatment
Related standard is:
NBS-S11: intervention/treatment: timely entry into clinical care
Resources to support providers and commissioners
Additional NBS operational guidance is included in the:
Reporting and publishing standards
We publish annual standards and quarterly KPI data. We share the data with NHS England before publication.
Services can also access the quarterly KPI submission templates.