Guidance

Newborn blood spot screening standards valid for data collected from 1 April 2021

Updated 8 October 2024

Applies to England

NBS-S01a: coverage of CCG responsibility at birth

Description

The proportion of babies registered within the clinical commissioning group (CCG) both at birth and on the last day of the reporting period who are eligible for newborn blood spot (NBS) screening and have a conclusive result for phenylketonuria (PKU) recorded on the child health information service system (CHISS) before or at 17 days of age.

Rationale

This standard is to ensure that all eligible babies receive NBS screening within an effective timeframe

Definition

Numerator: number of eligible babies who have a conclusive result for PKU recorded on the child health information service system (CHISS) before or at 17 days of age.

Denominator: number of eligible babies born within the reporting period, excluding any baby who died before the age of 8 days. For this standard, the cohort includes only babies for whom the CCG was responsible at birth and on the last day of the reporting period.

For the purposes of this standard, day of birth is day 0.

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

Exclusions

1. This standard does not measure babies who change responsible CCG since birth or move in from another UK country or abroad (movers in) even though these babies are eligible for screening - this is measured using standard NBS-S01b.

2. The numerator excludes eligible babies with an inconclusive result for PKU (for example, status code 03 repeat or further sample required) or a conclusive result for PKU recorded on the CHISS after 17 days of age.

Responsible CCG refers to all babies registered with a GP within the CCG. Data should be grouped and reported per CCG responsible population, or UK equivalent, using the baby’s, or if not available, mother’s GP practice code. If neither the baby nor mother’s GP is known, responsibility is determined by place of residence.

A conclusive result for PKU is one of the following newborn screening status codes:

• 04 not suspected
• 07 not suspected: other disorders follow up
• 08 suspected

Declines (status code 02) should be recorded on the CHISS and included in the denominator but not the numerator. Decline data is collected alongside coverage data to help interpretation.

Performance thresholds

Acceptable level: greater than or equal to 95.0%.

Achievable level: greater than or equal to 99.0%.

Caveats

None.

Data collection and reporting

Data source: CHISS.

Responsible for data quality and completeness: child health information service (CHIS).

Responsible for submission: CHIS.

Reported by: CHIS.

Published by: CCG.

This standard is also the key performance indicator NB1.

Reporting period

Quarterly; data to be collated between 2 and 3 months after each quarter end.

Deadlines: 30 September (Q1), 31 December (Q2), 31 March (Q3), 30 June (Q4).

Review dates

Date standard introduced: 1 April 2005.

Date standard last updated: 1 April 2020.

NBS-S01b: coverage of movers in

Description

The proportion of all babies eligible for newborn blood spot (NBS) screening who have both:

• changed responsible clinical commissioning group (CCG), or have moved in from another UK country or abroad, in the reporting period
• a conclusive result for phenylketonuria (PKU) recorded on the child health information service system (CHISS) on or before 21 calendar days of notifying the child health department of movement in

Rationale

To provide assurance that all eligible babies that move in and become the responsibility of the CCG receive NBS screening within an effective timeframe.

See NBS screening guidance for movers in under a year of age with no available records.

Definition

Numerator: number of eligible babies who have a conclusive result for PKU recorded on the CHISS on or before 21 calendar days of notifying the child health department of movement in.

Denominator: number of babies:

• who have changed responsible CCG, or moved in from another UK country or abroad, during the reporting period
• for whom the CCG is responsible on the last day of the reporting period
• are under a year of age (up to but not including their first birthday) at the point of notifying the child health department of movement in

The denominator includes all babies who meet all the criteria above, not just babies who move in without documented results.

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

Exclusions

1. This standard does not measure babies who are already the responsibility of the CCG at birth and transfer within the same CCG. Standard NBS-S01a captures babies registered within the CCG both at birth and on the last day of the reporting period.

2. The numerator excludes eligible babies with an inconclusive result for PKU (for example, status code 03 repeat or further sample required) or a conclusive result for PKU recorded on the CHISS after 21 calendar days.

Responsible CCG refers to all babies that are registered with a GP within the CCG. The data should be grouped and reported per CCG responsible population, or UK equivalent, using the baby’s, or if not available, mother’s GP practice code. If neither the baby nor mother’s GP is known, responsibility is determined by place of residence.

Changed responsible CCG - baby was born out of the CCG but has become its responsibility because he or she moved and was notified to the child health department within the reporting period.

Notifying the child health department of movement in. This is either the point of direct electronic registration on the CHISS or the point of receipt of phone or email notification to the child health department.

A conclusive result for PKU is one of the following newborn screening status codes:

• 04 not suspected
• 07 not suspected: other disorders follow up
• 08 suspected

Declines (status code 02) should be recorded on the CHISS and included in the denominator but not the numerator. Decline data is collected alongside coverage data to help interpretation.

Performance thresholds

Acceptable level: greater than or equal to 95.0%.

Achievable level: greater than or equal to 99.0%.

Caveats

Screening should be offered to all eligible babies under a year of age (up to but not including their first birthday) without documented results (or declines) for all 9 conditions. Note that cystic fibrosis (CF) can only be screened for up to 8 weeks of age. If screening is accepted, the sample must be taken no later than 14 calendar days after the baby’s first birthday. Samples should not be taken later than 14 calendar days after the baby’s first birthday as they will not be eligible for screening. These babies should still be recorded in the denominator.

If your process is to offer and take the sample on the same day, this can only be done before the baby’s first birthday.

Data collection and reporting

Data source: CHISS.

Responsible for data quality and completeness: CHIS.

Responsible for submission: CHIS.

Reported by: CHIS.

Published by: CCG.

This standard is also the key performance indicator NB4.

Reporting period

Quarterly: data to be collated between 2 and 3 months after each quarter end.

Deadlines: 30 September (Q1), 31 December (Q2), 31 March (Q3), 30 June (Q4).

Review dates

Date standard introduced: 1 April 2014.

Date standard last updated: 1 April 2020.

NBS-S02: coverage: timely identification of babies with a null or incomplete result recorded on the CHISS

Description

The child health department has a process in place to identify babies with a null or incomplete newborn blood spot (NBS) result that meets the standard.

Rationale

The NBS programme relies on regular checks of the CHISS to identify babies with a null or incomplete result within an effective timeframe. Reports are produced to identify these babies and action is taken to follow them up, according to local protocols.

Definition

Child health information services are asked to report whether they have a system in place that meets the standard for identifying babies with a null or incomplete NBS result for any of the 9 conditions.

There can be flexibility in the frequency and age range of reports providing the method complies with the acceptable performance threshold - for example daily check of babies between 17 and 364 days of age; weekly check of babies between 11 and 364 days of age.

For the purposes of this standard, day of birth is day 0.

Null or incomplete NBS result:

• no status code recorded
• status code 01 (newborn blood spot card received in laboratory)
• status code 03 (repeat or further sample required)

Performance thresholds

Acceptable level: CHIS performs regular checks (ideally daily, minimum weekly) to identify babies between 17 and 364 days of age with a null or incomplete result.

Achievable level: CHIS performs regular checks (ideally daily, minimum weekly) to identify babies between 14 and 364 days of age with a null or incomplete result.

Caveats

None.

Data collection and reporting

Data source: CHISS.

Responsible for data quality and completeness: CHIS.

Responsible for submission: CHIS.

Reported by: CHIS.

Published by: CCG.

Reporting period

Annually (1 April to 31 March).

Deadline: 30 June.

Review dates

Date standard introduced: 1 April 2005.

Date standard last updated: 1 April 2020.

NBS-S03: test: barcoded NHS number label is included on the blood spot card

Description

The proportion of blood spot cards received by the laboratory with the baby’s NHS number on a barcoded label.

Rationale

Use of the NHS number on the baby’s blood spot card is mandatory in England. Use of a barcoded NHS number label will reduce the risk of an inaccurate NHS number on the blood spot card which would require a repeat sample to be taken.

Definition

Numerator: 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.

Denominator: number of all blood spot cards received by the laboratory, including repeat or further samples, excluding blood spot samples received from places that do not use an NHS number - for example Jersey and Guernsey.

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

Performance thresholds

Acceptable level: greater than or equal to 90.0%.

Achievable level: greater than or equal to 95.0%.

Caveats

None.

Data collection and reporting

Data source: newborn screening laboratories.

Responsible for data quality and completeness: newborn screening laboratories.

Responsible for submission: newborn screening laboratories.

Reported by: newborn screening laboratories.

Published by: maternity service.

Reporting period

Annually for samples received in the laboratory in the previous year (1 April to 31 March).

Deadline: 15 July.

Review dates

Date standard introduced: 1 April 2005.

Date standard last updated: 1 April 2020.

NBS-S04: test: timely sample collection

Description

The proportion of first blood spot samples taken on day 5.

Rationale

It is essential to begin the screening process promptly to give each screen positive baby the best possible chance of receiving early treatment. The blood spot sample should be taken on day 5.

Definition

Numerator: number of first blood spot samples taken on day 5.

Denominator: number of first blood spot samples received by the laboratory in the reporting period.

For the purposes of this standard, day of birth is day 0.

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

Exclusions

Pre-transfusion samples are excluded from the denominator and numerator.

The sample should be taken in accordance with the Guidelines for Newborn Blood Spot Sampling.

Performance thresholds

Acceptable level: greater than or equal to 90.0%.

Achievable level: greater than or equal to 95.0%.

Caveats

If a baby has had a blood transfusion on or before day 5, the blood spot sample can be taken between day 6 and day 8 inclusive. This is to make sure that there is a clear window between the transfusion and the sample being taken. The routine blood spot sample must be taken by day 8 at the latest. These babies should still be included in the denominator.

Data collection and reporting

Data source: newborn screening laboratories.

Responsible for data quality and completeness: newborn screening laboratories.

Responsible for submission: newborn screening laboratories.

Reported by: newborn screening laboratories.

Published by: maternity service.

Reporting period

Annually for samples received in the laboratory in the previous year (1 April to 31 March).

Deadline: 15 July.

Review dates

Date standard introduced: 1 April 2005.

Date standard last updated: 1 April 2020.

NBS-S05: test: timely receipt of a sample in the newborn screening laboratory

Description

The proportion of blood spot samples received less than or equal to 3 working days after sample collection.

Rationale

All samples must arrive within the screening laboratory as soon as possible after the sample has been taken. This enables the laboratory to analyse the sample at the earliest opportunity and reduces the risk of sample deterioration due to prolonged dispatch. Laboratories will reject samples if received more than 14 calendar days after the sample was taken.

Definition

Numerator: number of blood spot samples received by the laboratory less than or equal to 3 working days after sample collection.

Denominator: number of blood spot samples received by the laboratory in the reporting period excluding pre-transfusion samples.

Sample received is when the sample is recorded as received on the laboratory information management system.

For the purposes of this standard, day of sample collection is day 0.

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

Exclusions

Pre-transfusion samples are excluded from the numerator and the denominator.

The sample should be taken in accordance with the Guidelines for Newborn Blood Spot Sampling.

Performance thresholds

Acceptable level: greater than or equal to 95.0%.

Achievable level: greater than or equal to 99.0%.

Caveats

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.

Data collection and reporting

Data source: newborn screening laboratories.

Responsible for data quality and completeness: newborn screening laboratories.

Responsible for submission: newborn screening laboratories.

Reported by: newborn screening laboratories.

Published by: maternity service.

Reporting period

Annually for samples received in the laboratory in the previous year (1 April to 31 March).

Deadline: 15 July.

Review dates

Date standard introduced: 1 April 2005.

Date standard last updated: 1 April 2020.

NBS-S06: test: quality of the blood spot sample

Description

The proportion of first blood spot samples that require repeating due to an avoidable failure in the sampling process.

Rationale

Good quality blood spot samples are vital to make sure that babies with rare but serious conditions are identified and treated early.

Good quality samples should be obtained first time to prevent the need for avoidable repeats. Avoidable repeat samples can cause anxiety for parents, distress to babies and delays in the screening process. They are also a waste of resources.

A good quality blood spot sample is one that:

• is taken at the right time
• has all data fields completed to enable identification of the baby, analysis and reporting of results
• contains sufficient blood to perform all tests (each circle filled and evenly saturated by a single drop of blood that soaks through to the back of the blood spot card)
• is not contaminated
• is on a card that has not expired
• arrives in the laboratory in a timely manner

Definition

Numerator: number of repeat or further samples requested by the laboratory during the reporting period because the previous sample was:

• taken when the baby was too young for reliable screening (on or before day 4, where day of birth is day 0) (excluding pre-transfusion samples)
• insufficient (small volume spots, blood not soaked through to the back of the blood spot card)
• unsuitable (for example incorrect blood application, blood from multiple samples on the same card, contaminated or damaged, compressed or incomplete drying, missing or inaccurate details, expired card, in transit for more than 14 calendar days)

Denominator: number of first blood spot samples received by the laboratory during the reporting period. This includes first blood spot samples for all eligible babies (those under one year of age).

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

Exclusions

Repeat samples requested because the previous sample was taken too soon after transfusion (less than 3 clear calendar days after last transfusion) are excluded from the numerator as the routine sample should be taken by day 8 at the latest.

The sample should be taken in accordance with the Guidelines for Newborn Blood Spot Sampling.

Further details on the avoidable repeat categories are available.

Performance thresholds

Acceptable level: less than or equal to 2.0%.

Achievable level: less than or equal to 1.0%.

Caveats

None.

Data collection and reporting

Data source: maternity services (KPI NB2) and newborn screening laboratories (NBS-S06).

Responsible for data quality and completeness: maternity services (KPI NB2) and newborn screening laboratories (NBS-S06).

Responsible for submission: maternity services (KPI NB2) and newborn screening laboratories (NBS-S06).

Reported by: maternity services (KPI NB2) and newborn screening laboratories (NBS-S06).

Published by: maternity service (KPI NB2) and newborn screening laboratory (NBS-S06).

This standard is also key performance indicator NB2.

Reporting period

NBS-S06: annually for samples received in the laboratory in the previous year (1 April to 31 March).

NBS-S06 deadline: 15 July.

KPI NB2: quarterly data to be collated between 2 and 3 months after each quarter end.

KPI NB2 deadlines: 30 September (Q1), 31 December (Q2), 31 March (Q3), 30 June (Q4).

Review dates

Date standard introduced: 1 April 2009.

Date standard last updated: 1 April 2020.

NBS-S07a: test: timely taking of a repeat blood spot sample following a CF inconclusive result

Description

The proportion of repeat blood spot samples taken at 21 to 24 days of age following a CF inconclusive result.

Rationale

To enable babies to enter a clinical referral pathway and start treatment in a timely manner.

Definition

Numerator: number of repeat blood spot samples for raised immunoreactive trypsinogen (IRT) taken on day 21 to day 24 of age (day of birth is day 0). This allows for day 21 to fall on a weekend when a special visit is not warranted.

Denominator: number of repeat blood spot samples for raised IRT requested by the laboratory due to a previous inconclusive CF result (due to 1 mutation or IRT greater than 120 ng/mL).

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

This standard relates to repeat samples collected due to previous inconclusive CF results. If a repeat sample has been collected for another reason for example an avoidable repeat or transfusion repeat, then it should be excluded.

Performance thresholds

Acceptable level: greater than or equal to 80.0%.

Achievable level: greater than or equal to 90.0%.

Caveats

None.

Data collection and reporting

Data source: newborn screening laboratories (note that newborn blood spot failsafe solution (NBSFS) will be used for reporting this standard when movers in are available on the system and data has been tested for quality).

Responsible for data quality and completeness: newborn screening laboratories.

Responsible for submission: newborn screening laboratories.

Reported by: newborn screening laboratories.

Published by: maternity service.

Reporting period

Annually for samples received in the laboratory in the previous year (1 April to 31 March).

Deadline: 15 July.

Review dates

Date standard introduced: 1 April 2017.

Date standard last updated: 1 September 2020.

NBS-S07b: test: timely taking of a repeat blood spot sample following a borderline CHT result

Description

The proportion of repeat blood spot samples taken between 7 and 10 calendar days following a borderline thyroid-stimulating hormone (TSH) result for CHT.

Rationale

To enable babies to enter a clinical referral pathway and start treatment in a timely manner.

Definition

Numerator: number of repeat blood spot samples for borderline TSH taken between 7 and 10 calendar days after the initial borderline sample was taken.

Denominator: number of repeat blood spot samples requested by the laboratory due to initial borderline CHT result.

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

This standard relates to repeat samples collected due to previous borderline CHT results. If a repeat sample has been collected for another reason for example an avoidable repeat or transfusion repeat, then it should be excluded.

Performance thresholds

Acceptable level: greater than or equal to 80.0%.

Achievable level: greater than or equal to 90.0%.

Caveats

None.

Data collection and reporting

Data source: newborn screening laboratories (note that newborn blood spot failsafe solution (NBSFS) will be used for reporting this standard when appropriate).

Responsible for data quality and completeness: newborn screening laboratories.

Responsible for submission: newborn screening laboratories.

Reported by: newborn screening laboratories.

Published by: maternity service.

Reporting period

Annually for samples received in the laboratory in the previous year (1 April to 31 March).

Deadline: 15 July.

Review dates

Date standard introduced: 1 April 2017.

Date standard last updated: 1 September 2020.

NBS-S07c: test: timely taking of a repeat blood spot sample for CHT screening for preterm infants

Description

The proportion of repeat blood spot samples taken for CHT screening for preterm infants taken on 28 days of age or discharge home.

Rationale

To enable babies to enter a clinical referral pathway and start treatment in a timely manner.

Definition

Numerator: number of repeat blood spot samples for preterm infants (less than or equal to 31 weeks plus 6 days) taken on day 28 including those taken earlier if the baby is discharged home before 28 days of age.

Denominator: number of repeat blood spot samples for CHT screening requested by the laboratory due to prematurity (less than or equal to 31 weeks plus 6 days’ gestation).

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

This standard relates to repeat samples for the CHT screen collected due to prematurity (less than or equal to 31 weeks plus 6 days’ gestation). If a repeat sample has been collected for another reason for example an avoidable repeat or transfusion repeat, then it should be excluded.

Performance thresholds

Acceptable level: greater than or equal to 75.0%.

Achievable level: greater than or equal to 85.0%.

Caveats

None.

Data collection and reporting

Data source: newborn screening laboratories (note that newborn blood spot failsafe solution (NBSFS) will be used for reporting this standard when appropriate).

Responsible for data quality and completeness: newborn screening laboratories.

Responsible for submission: newborn screening laboratories.

Reported by: newborn screening laboratories.

Published by: maternity service.

Reporting period

Annually for samples received in the laboratory in the previous year (1 April to 31 March).

Deadline: 15 July.

Review dates

Date standard introduced: 1 April 2017.

Date standard last updated: 1 September 2020.

NBS-S09: referral: timely processing of CHT and IMD (excluding HCU) screen positive samples

Description

The proportion of babies with screen positive results available for:

• congenital hypothyroidism (CHT)
• phenylketonuria (PKU)
• glutaric aciduria type 1 (GA1)
• medium-chain acyl-CoA dehydrogenase deficiency (MCADD)
• maple syrup urine disease (MSUD)
• isolvaleric acidemia (IVA)

and clinical referral initiated up to 3 working days of sample receipt by the screening laboratory.

PKU, GA1, MCADD, MSUD and IVA are inherited metabolic diseases (IMDs).

Rationale

Health benefits for babies with a condition are maximised through timely processing of screen positive samples and clinical referral.

Definition

For CHT

Numerator: number of babies with CHT screen positive results available, and clinical referral initiated, before or at 3 working days of sample receipt by the screening laboratory.

Denominator: number of babies with CHT screen positive results available.

Working days include Monday to Friday.

Some babies have more than one sample taken to achieve the final CHT screening result. This standard only applies to receipt of the sample that generated the final screen positive result and initiated the referral.

For PKU and GA1

Numerator: number of babies with PKU or GA1 screen positive results available, and clinical referral initiated, before or at 3 working days of sample receipt by the screening laboratory.

Denominator: number of babies with PKU or GA1 screen positive results available.

Working days include Monday to Friday.

For MCADD, MSUD and IVA

Numerator: number of babies with MCADD, MSUD or IVA screen positive results available, and clinical referral initiated, before or at 3 working days of sample receipt by the screening laboratory.

Denominator: number of babies with MCADD, MSUD or IVA screen positive results available.

Working days include Monday to Saturday.

For all conditions

Sample receipt is when the sample is recorded as received on the laboratory information management system. Count this as day 1.

Laboratories shall notify positive screening results in accordance with the initial clinical referral guidelines for each condition. This notification initiates the clinical referral of babies with screen positive results.

Homocystinuria (HCU) is excluded from this standard because the screening protocol includes a second line test on the original sample following a raised first line test result.

Performance thresholds

Acceptable level: 100%.

Achievable level: Not applicable.

Caveats

None.

Data collection and reporting

Data source: newborn screening laboratories.

Responsible for data quality and completeness: newborn screening laboratories.

Responsible for submission: newborn screening laboratories.

Reported by: newborn screening laboratories.

Published by: newborn screening laboratory.

Reporting period

Annually for samples received in the laboratory in the previous year (1 April to 31 March).

Deadline: 15 July.

Review dates

Date standard introduced: 1 April 2005.

Date standard last updated: 1 April 2020.

NBS-S11: intervention or treatment: timely entry into clinical care

Description

The proportion of babies referred to specialist services who are seen by the condition-specific standard.

Rationale

Timely entry into clinical care of all screen positive babies is vital to ensure that health benefits are achieved by reducing morbidity or mortality.

Definition

For each condition:

Numerator: number of screen positive babies referred to specialist services who are seen by the condition-specific standard.

Denominator: number of screen positive babies referred.

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

Performance thresholds

Condition: inherited metabolic diseases (excluding homocystinuria (HCU)) and congenital hypothyroidism (CHT) suspected on first sample.

Intervention or treatment: attend first clinical appointment by 14 days of age.

Acceptable level: 100%.

Condition: CHT suspected on repeat or further sample following a borderline thyroid-stimulating hormone.

Intervention or treatment: attend first clinical appointment by 21 days of age.

Acceptable level: 100%.

Condition: cystic fibrosis (CF) (2 CFTR mutations detected) and HCU.

Intervention or treatment: attend first clinical appointment by 28 days of age.

Acceptable level: greater than or equal to 95.0%.

Achievable level: 100%.

Condition: CF (1 or no CFTR mutations detected).

Intervention or treatment: attend first clinical appointment by 35 days of age.

Acceptable level: greater than or equal to 80.0%.

Achievable level: 100%.

Condition: sickle cell disease.

See the sickle cell and thalassemia screening programme standards.

Caveats

None.

Data collection and reporting

Data source: newborn screening laboratories.

Responsible for data quality and completeness: newborn screening laboratories.

Responsible for submission: newborn screening laboratories.

Reported by: newborn screening laboratories.

Published by: newborn screening laboratory.

Reporting period

Annually for babies born in the previous year (1 April to 31 March).

Deadline: 15 July.

Review dates

Date standard introduced: 1 April 2014.

Date standard last updated: 1 April 2020.

NBS-S12a: test: timeliness of results to parents for CCG responsibility at birth

Description

The proportion of babies who have a not suspected result for all the conditions tested for and have a results letter sent to their parents directly from the child health information service (CHIS) before or at 6 weeks from birth.

Rationale

To minimise anxiety for parents by conveying newborn blood spot (NBS) screening results in a timely manner.

Definition

Numerator: number of babies who have a not suspected result for all the conditions tested for and have a results letter sent to their parents directly from the CHIS before or at 6 weeks from birth.

Denominator: number of babies who have a not suspected result for all the conditions tested for recorded on CHISS before or at 6 weeks from birth.

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

Not suspected result - status code 04 and 10. Further information is available on the status codes.

This standard only includes babies who have a ‘not suspected’ result for all the conditions tested for.

This standard excludes babies who:

• have a condition suspected or carrier result for any of the conditions tested for
• have a status code that denotes a declined condition, a repeat required or screening incomplete
• are covered by a CHIS that does not send results letters directly to parents (for example the results are communicated by health visitors instead)

Where ‘not suspected’ results letters are not sent directly to parents by CHIS, SITs should provide evidence that health visitors have given the results to parents and documented this in the personal child health record (‘red book’). This could be achieved through local audit with stakeholders.

Template letters are available.

Performance thresholds

Acceptable level: greater then or equal to 99.0%.

Achievable level: greater then or equal to 99.5%.

Caveats

None.

Data collection and reporting

Data source: CHISS

Responsible for data quality and completeness: CHIS.

Responsible for submission: CHIS.

Reported by: CHIS.

Published by: CCG.

Reporting period

Annually for babies born in the previous year (1 April to 31 March).

Deadline: 30 June.

Review dates

Date standard introduced: 1 April 2014.

Date standard last updated: 1 April 2020.

NBS-S12b: test: timeliness of results to parents for movers in

Description

The proportion of babies who have a not suspected result for all the conditions tested for and have a results letter sent to their parents directly from the CHIS before or at 6 weeks from notification of movement in.

Rationale

To minimise anxiety for parents by conveying NBS screening results in a timely manner.

Definition

Numerator: number of babies who have a not suspected result for all the conditions tested for and have a results letter sent to their parents directly from the CHIS before or at 6 weeks from notification of movement in.

Denominator: number of babies who have a not suspected result for all the conditions tested for recorded on the CHISS before or at 6 weeks from notification of movement in.

We calculate performance by dividing numerator by denominator and multiplying by 100 to give a percentage.

Not suspected result - status code 04 and 10. Further information is available on the status codes.

This standard only includes babies who:

• move in without documented results (or declines) for all the conditions tested for and are offered screening; and
• have a not suspected result for all the conditions tested for

This standard excludes babies who:

• have a condition suspected or carrier result for any of the conditions tested for
• have a status code that denotes a declined condition, a repeat required or screening incomplete
• are covered by a CHIS that does not send results letters directly to parents (for example the results are communicated by health visitors instead)

Where not suspected results letters are not sent directly to parents by CHIS, screening and immunisation teams should provide evidence that health visitors have given the results to parents and documented this in the personal child health record (‘red book’). This could be achieved through local audit with stakeholders.

Performance thresholds

Acceptable level: greater than or equal to 99.0%.

Achievable level: greater than or equal to 99.5%.

Caveats

Babies more than 8 weeks of age are too old for cystic fibrosis screening but are still eligible to be screened for the other conditions.

Data collection and reporting

Data source: CHISS.

Responsible for data quality and completeness: CHIS.

Responsible for submission: CHIS.

Reported by: CHIS.

Published by: CCG.

Reporting period

Annually for babies born in the previous year (1 April to 31 March).

Deadline: 30 June.

Review dates

Date standard introduced: 1 April 2017.

Date standard last updated: 1 April 2020.