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NHS Screening Programmes Key Performance Indicators (KPIs)

This submission template must only be used for data being submitted by
MATERNITY SERVICES
The Q4 (January to March) 2022 to 2023 submission window is 01 to 30 June
Forms that are not completed correctly WILL be returned for re-submission

Instructions for use

1) The data entry forms to be used for your KPI submission are the worksheets from 'Page 1' to 'Page 4'

2) Cells that require completion are highlighted in YELLOW.

3) On 'Page 1', select the name of the organisation that you're submitting data for from the drop down menu

4) If you cannot submit data for a KPI please state in the comments box why and when a solution and submission is expected to start

How to submit

Please ensure that your data is signed off before it is submitted.

The completed template should be emailed to (click on the link): england.screeningdata@nhs.net

Please email any queries to (click on the link): phe.screeninghelpdesk@nhs.net

Index to worksheets
Guidance This sheet

Page 1 Q4 2022 to 2023 ID2 to NB2 KPI data

Page 2 Q4 2022 to 2023 IDPS (ID1, ID3, ID4) and SCT (ST1) antenatal coverage KPI data

Page 3 Q3 2022 to 2023 FA2 fetal anomaly 20-week screening scan coverage KPI data

Page 4 Q4 2022 to 2023 FA3 T21/T18/T13 screening coverage KPI data

Page 5 Q4 2022 to 2023 NIPT experimental standards

KPI descriptions List of screening KPIs (thresholds, numerator and denominator definitions)

Version control
Version 1.0 19 April 2023
For instructions please see 'Guidance' worksheet (click this cell to view)
Complete all fields highlighted in yellow

Submitted by Signed off by


(name, title and organisation) (name, title and organisation)

Submitted by Signed off by


(email address) (email address)

Name of organisation
Reporting period Q4 2022 to 2023 - 01 January to 31 March 2023
responsible for submission

Name of maternity service Organisation code


(select from drop-down) (autocompleted)

KPI Acceptable Achievable


Click the hyperlinks below to go Numerator Denominator Performance* Commentary / explanatory note
threshold threshold
to the full definition

If there are zero cases


ID2: timely assessment of women with hepatitis B ≥ 70.0% ≥ 90.0% please state 'No cases' in
the notes

ST2: timeliness of antenatal screening ≥ 50.0% ≥ 75.0%

ST3: completion of FOQ ≥ 95.0% ≥ 99.0%

If there are zero cases


ST4a: timely offer of PND to women at risk of having an infant with SCD or thalassaemia To be set To be set please state 'No cases' in
the notes

If there are zero cases


ST4b: timely offer of PND to couples at risk of having an infant with SCD of thalassaemia To be set To be set please state 'No cases' in
the notes

Can you confirm that this


NB2: avoidable repeat tests ≤ 2.0% ≤ 1.0% data has been produced for
the maternity service?

*The performance percentages displayed are rounded to one decimal point for ease of reading, however the exact values are used when rating performance against the thresholds. This may result in rounded
figures appearing to be the same as an acceptable or achievable threshold but RAG indicating a lower performance.
For instructions please see 'Guidance' worksheet (click this cell to view)
Complete all fields highlighted in yellow

Name of maternity service Acceptable Achievable


Reporting period
(autocompleted) threshold threshold

Organisation code Q4 2022 to 2023 - 01 January to


≥ 95.0% ≥ 99.0%
(autocompleted) 31 March 2023

EXCLUSIONS - Women excluded from the denominator


Declines Women left to
All women tested
For ID1 and follow up
ALL pregnant Transfers in Denominator in this pregnancy Numerator Additional comments - please
ID3 only: (For IDPS this Performance*
women booked (eligible (tested account for and provide an
KPI for antenatal care Transfers out
who have a
women) (For ID1 and ID3 women)
is the women (%) Please account
explanation for the women left to
Click the hyperlinks below to Miscarriages Terminations result from a Women known who declined for these in the
or presenting between this includes follow up
go to the full definition between between screening test to be positive both initial offer This field is comments
unbooked in booking and This field is women known This field is
booking and booking and performed and not re- and formal re- autocalculated
labour testing (do not auto-calculated positive and auto-calculated For example: did not attend etc
testing testing elsewhere in tested offer of This field is auto-
have a result) re-tested)
the NHS in this screening) calculated
pregnancy

ID1 - HIV coverage


1000 1 2 0 5 992 975 5 980 10 98.8% 2 2 DNA
WORKED EXAMPLE

ID1: HIV coverage ###

ID3: hepatitis B coverage ###

ID4: syphilis coverage N/A ###

ST1: antenatal screening coverage N/A ###

*The performance percentages displayed are rounded to one decimal point for ease of reading, however the exact values are used when rating performance against the thresholds. This may result in rounded figures appearing to be
the same as an acceptable or achievable threshold but RAG indicating a lower performance.
FA2 is collected 2 quarters in arrears. This tab is for collection of Q3 2022 to 2023 FA2 data

For instructions please see 'Guidance' worksheet (click this cell to view)
Complete all fields highlighted in yellow

Name of maternity service Acceptable Achievable


Reporting period
(autocompleted) threshold threshold

Organisation code Q3 2022 to 2023 - 01 October to


≥ 95.0% ≥ 99.0%
(autocompleted) 31 December 2022

EXCLUSIONS - Women excluded from the denominator

Women left to
Transfers in at ≤ follow up
23+0 weeks of Denominator Performance Additional comments - please account for
Numerator
ALL pregnant (eligible Women tested Women tested Women tested (%) and provide an explanation for the women
KPI women booked Transfers out
pregnancy who
Presenting to women) between: between: between:
(tested women) Please account
left to follow up
Click the hyperlink below to go Miscarriages Terminations have a result Declines for these in the
for antenatal Presenting to between service between ≥ 18+0 to ≥ 21+0 to ≥ 22+0 to This field is
to the full definition between between from a This field is auto- comments
care service ≥ 23+1 booking and ≥ 22+0 and ≤ This field is auto- ≤ 20+6 weeks ≤ 21+6 weeks ≤ 23+0 weeks autocalculated For example: did not attend, tested outside of the
booking and booking and screening test calculated
weeks testing (do not 23+0 weeks calculated See 2 below timeframe etc
testing testing performed This field is auto-
have a result) See 1 below
elsewhere in calculated
the NHS in this
pregnancy

FA2 - coverage: 20-week


screening scan - WORKED 1000 1 2 4 1 2 5 985 945 10 10 965 10 98.0% 10 7 women tested outside timeframe, 3 DNA
EXAMPLE

FA2: coverage: 20-week screening scan ###

1) We recognise that ultrasound departments may not always have the capacity to accommodate women presenting later in pregnancy and have allowed leeway of one week. Therefore if you are
not able to offer and complete the fetal anomaly scan to women presenting to service between ≥ 22 weeks + 0 days and ≤ 23 weeks + 0 days they can be excluded. If you were able to offer these
women the fetal anomaly scan they should be included in the denominator and numerator.

2) The performance percentages displayed are rounded to one decimal point for ease of reading, however the exact values are used when rating performance against the thresholds. This may
result in rounded figures appearing to be the same as an acceptable or achievable threshold but RAG indicating a lower performance.
For instructions please see 'Guidance' worksheet (click this cell to view)
Complete all fields highlighted in yellow

Name of maternity service Acceptable


Reporting period Achievable threshold
(autocompleted) threshold

Organisation code
Q4 2022 to 2023 - 01 January to 31 March 2023 Not set - See 4 below
(autocompleted)

EXCLUSIONS - Women excluded from the denominator

Women left to
follow up
Vanished twin Denominator Additional comments - please account for and
ALL pregnant Transfer in with a crown Present to ultrasound with a (eligible provide an explanation for the women left to
KPI women Presenting to Transfers out rump length (CRL) ≤ CRL between 45.0mm and
where Presenting to
women)
Numerator Please account
follow up
Click the hyperlink below to go Miscarriages Terminations Pregnancies of a ultrasound service (tested women) Declines for these in the
booked for service ≥ 14 between 84.0mm (≤ 14+1 weeks) 84.0mm (≥ 11+2 to ≤ 14+1)
to the full definition between between higher order than shows there is between ≥ See 3 below comments
antenatal care weeks + 2 days booking and who have a result from a where it was not technically This field is auto- For example: did not attend, tested outside of the
booking and booking and twins (for example a second sac 13+1 and ≤
(CRL testing (do not screening test performed possible to measure the calculated timeframe etc
testing testing triplets) containing a 14+1 weeks This field is auto-
>84.0mm) have a result) elsewhere in the NHS in nuchal translucency (NT)
non-viable See 2 below calculated
this pregnancy See 1 below
fetus

FA3 - coverage: T21/T18/T13


screening 1000 1 2 4 1 2 5 5 5 1 974 770 200 4 4 DNA
WORKED EXAMPLE

FA3: coverage: T21/T18/T13 screening

1) Unable to complete the measurement of the Nuchal Translucency (NT) due to technical reasons, for example maternal BMI or unfavourable fetal position.

2) Ultrasound departments may not always have the capacity to accommodate women presenting later in pregnancy and we have allowed leeway of 1 week. Therefore, if you are not able to offer the combined test to women presenting to service between ≥ 13 weeks + 1 days and ≤ 14 weeks +
1 day they can be excluded. If you were able to offer these women the combined test they should be included in the denominator and numerator.

3) The numerator includes:


· women who have T21 only
· women who have T18/T13 only
· women who have T21 and T18/T13
4) Thresholds:
Thresholds are not set for this KPI. FASP supports informed choice for women. This KPI enables service providers to be assured that all eligible women are offered the opportunity of screening and where this offer is accepted that women complete the screening pathway.
NIPT EXPERIMENTAL METRICS
For instructions please see 'Guidance' worksheet (click this cell to view)
All 3 NIPT metrics are on this page, please scroll down and complete all fields highlighted in yellow, even if you have zero (do not leave blank).

Name of maternity service


Reporting period
(autocompleted)

Organisation code Q4 2022 to 2023 - 01 January to 31 March


(autocompleted) 2023

EXCLUSIONS - Women excluded from the denominator Declined NIPT


Women left to
Number of women Numerator follow up
Maternal Performance
with higher chance Uncertain Denominator number of
Miscarry between Transfer out between immunotherapy Maternal Down's Chose to have (%) Additional comments - please account for and provide
combined or eligibility (eligible women) ‘eligible women’ Please account for
an explanation for the women left to follow up
METRIC quadruple screening receiving a higher receiving a higher
Maternal blood Maternal bone
in the current syndrome or a
criteria - and for whom a NIPT PND following
This field is
these in the
test results chance combined or chance combined or Maternal cancer, unless pregnancy Maternal stem cell balanced Vanished twin This field is auto- screening result Chose no a higher comments
transfusion in the last 4 marrow or organ these woman autocalculated For example: did not attend, lost to follow up
including twin quadruple screening quadruple screening in remission (excluding therapy translocation or pregnancy calculated was available at further testing chance
months transplant were not See 1 below
pregnancies result and having a result and having a intravenous mosaicism of the day of report combined or This field is auto-
eligible
NIPT screening test NIPT screening test immunoglobulin T21, T18 or T13 quad calculated
See 2 below
treatment)

NIPT-S01: coverage NIPT


20 0 2 0 1 0 0 0 0 0 1 16 12 2 1 75.0% 1 1 DNA
WORKED EXAMPLE

NIPT-S01: coverage NIPT

1) Thresholds:
Thresholds are not set for this metric. FASP supports personal informed choice for women. This metric enables service providers to be assured that all eligible women are offered the opportunity of NIPT screening and where this offer is accepted that women complete the
screening pathway.
2) There may be women where you are uncertain of their eligibility (see uncertain eligibility criteria in the operational guidance) and need to check with the laboratory. If these women are found to be ineligible they should be excluded by counting them in this box. If they are
eligible you do not need to count them in this exclusion box as they are part of the denominator.
Link to operational guidance: https://www.gov.uk/government/publications/screening-for-downs-syndrome-edwards-syndrome-and-pataus-syndrome-non-invasive-prenatal-testing-nipt/experimental-fasp-nipt-metrics

Count each woman only once, on the day that she attended Numerator: number of
women attending an Denominator: number
Performance (%)
appointment ≤ 3 of women for whom a
See 1 below
working days to discuss higher chance or 'no Acceptable Achievable
METRIC Women attending an Women attending an Women attending an their results result' NIPT screening threshold threshold
Commentary / explanatory note
This field is auto-
appointment at 1 appointment at 2 appointment at 3 result is received by the
calculated
working day working days working days This field is auto- maternity service
calculated

If there were zero


NIPT-S04: referral: timeliness of information and support ≥ 97.0% ≥ 99.0% women enter zero
in the denominator

1) The performance percentages displayed are rounded to one decimal point for ease of reading, however the exact values are used when rating performance against the thresholds. This may result in rounded figures appearing to be the
same as an acceptable or achievable threshold but RAG indicating a lower performance.

Denominator:
Numerator: number number of PND Performance (%)
of PND procedures procedures in women Acceptable Achievable
METRIC completed ≤ 3 receiving a higher This field is auto- threshold threshold
Commentary / explanatory note
working days chance or 'no result' calculated
NIPT screening result

If there were zero


PND procedures
NIPT-S05: diagnosis/intervention: timeliness of prenatal diagnosis No thresholds set yet enter zero in the
denominator
KPI
Programme Title
(standard)

FA2 Fetal anomaly Coverage: 20-week


(FASP-S02) screening screening scan

FA3 Fetal anomaly Coverage: T21/T18/T13


(FASP-S01) screening screening

Infectious
ID1 diseases in
Coverage: HIV
(IDPS-S01) pregnancy
screening
Infectious
Diagnosis/intervention:
ID2 diseases in
timely assessment of
(IDPS-S06) pregnancy
women with hepatitis B
screening

Infectious
ID3 diseases in
Coverage: hepatitis B
(IDPS-S02) pregnancy
screening

Infectious
ID4 diseases in
Coverage: syphilis
(IDPS-S03) pregnancy
screening

NB2 Newborn blood Test: quality of the


(NBS-S06) spot screening blood spot sample

Sickle cell and


ST1 Coverage: antenatal
thalassaemia
(SCT-S01) screening
screening

Sickle cell and


ST2 Test: timeliness of
thalassaemia
(SCT-S02) antenatal screening
screening

Sickle cell and Test: completion of


ST3
thalassaemia family origin
(SCT-S03)
screening questionnaire (FOQ)
Referral: timely offer of
Sickle cell and prenatal diagnosis
ST4a
thalassaemia (PND) to women at risk
(SCT-S05a)
screening of having an infant with
SCD or thalassaemia

Referral: timely offer of


prenatal diagnosis
Sickle cell and
ST4b (PND) to couples at
thalassaemia
(SCT-S05b) risk of having an infant
screening
with SCD or
thalassaemia

NIPT EXPERIMENTAL METRICS

NIPT metric Programme Title

FASP Fetal anomaly


Coverage: NIPT
NIPT-S01 screening
Referral: timeliness of
FASP Fetal anomaly
information and
NIPT-S04 screening
support

Diagnosis and
FASP Fetal anomaly intervention:
NIPT-S05 screening timeliness of prenatal
diagnosis (PND)
Description Thresholds

Acceptable
The proportion of pregnant women eligible for
≥ 95.0%
the 20-week screening scan who are tested,
leading to a conclusive result within the
Achievable
defined timescale.
≥ 99.0%

The proportion of pregnant women eligible for


combined screening for Down’s syndrome
(T21), Edwards’ syndrome (T18) and Patau’s
Not set
syndrome (T13) for whom a conclusive
screening result is available at the day of
report.

Acceptable
The proportion of pregnant women eligible for
≥ 95.0%
human immunodeficiency virus (HIV)
screening for whom a confirmed screening
Achieveable
result is available at the day of report
≥ 99.0%
Acceptable
The proportion of pregnant women who are
≥ 70.0%
hepatitis B positive attending for specialist
assessment within 6 weeks of the positive
Achievable
result being reported to the maternity service
≥ 90.0%

Acceptable
The proportion of pregnant women eligible for
≥ 95.0%
hepatitis B screening for whom a confirmed
screening result is available at the day of
Achieveable
report
≥ 99.0%

Acceptable
The proportion of pregnant women eligible for
≥ 95.0%
syphilis screening for whom a confirmed
screening result is available at the day of
Achieveable
report
≥ 99.0%

Acceptable
The proportion of first blood spot samples that ≤ 2.0%
require repeating due to an avoidable failure
in the sampling process Achievable
≤ 1.0%

Acceptable
The proportion of pregnant women eligible for
≥ 95.0%
antenatal sickle cell and thalassaemia (SCT)
screening for whom a screening result is
Achievable
available at the day of report
≥ 99.0%

Acceptable
The proportion of pregnant women having
≥ 50.0%
antenatal sickle cell and thalassaemia
screening for whom a screening result is
Achievable
available ≤10 weeks + 0 days gestation
≥ 75.0%

Acceptable
The proportion of antenatal SCT samples ≥ 95.0%
submitted to the laboratory accompanied by a
completed family origin questionnaire Achievable
≥ 99.0%
Proportion of women at increased risk of
having a baby with sickle cell disease or
To be set
thalassaemia offered PND ≤12 weeks +0 days
gestation.

Proportion of couples at increased risk of


having a baby with sickle cell disease or
To be set
thalassaemia offered PND ≤12 weeks +0 days
gestation.

Description Thresholds

Thresholds
The proportion of pregnant women eligible for are not set for
NIPT screening for whom a conclusive this metric.
screening result is available at the day of NHS FASP
report. supports
personal
informed
choice for
women.
Acceptable
The proportion of women with higher chance
≥ 97.0%
or ‘no result’ NIPT screening results attending
an appointment ≤ 3 working days to discuss
Achievable
their results.
≥ 99.0%

The proportion of PND procedures completed


≤ 3 working days of women receiving their
Not yet set
higher chance or ‘no result’ NIPT screening
results.
Numerator definition

Numerator: number of eligible women for whom a completed screening result was available
from the screening scan (18+0 to 23+0 weeks of pregnancy) at the day of report.

Tested women is the number of eligible women for whom a completed screening result was
available from the combined test (T21 and/or joint T18 and T13) screening at the day of
report.

Numerator: tested women is the total number of eligible women for whom a confirmed
screening result was available for HIV at the day of report, including women who were known
to be HIV positive at booking and not retested.
Numerator: number of pregnant women with hepatitis B who are booked in the reporting
period, who have been seen by a specialist within an effective timeframe, including:

• all newly diagnosed hepatitis B positive women


• women already known to be hepatitis B positive with high infectivity markers detected in the
current pregnancy

Numerator: tested women is the total number of eligible women for whom a confirmed
screening result was available for hepatitis B at the day of report, including women who were
known to be hepatitis B positive at booking and not retested.

Numerator: tested women is the total number of eligible women for whom a confirmed
screening result was available for syphilis at the day of report

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)

Numerator: tested women is the total number of eligible women for whom a screening result is
available for sickle cell and thalassaemia at the day of report, including known at risk couples
referred directly for prenatal diagnosis (PND). Repeat testing must not delay referral.

Numerator: women where test result is available ≤10 weeks + 0 days gestation is the total
number of pregnant women for whom a screening sample was received in the laboratory and
for whom an antenatal SCT screening result was available (though not necessarily
communicated to the woman) ≤10 weeks + 0 days gestation (≤70 days)

Numerator: number of antenatal screening samples received by the laboratory with completed
FOQ. A completed FOQ must use the national template (paper or electronic format) and must
include:
• at least 1 box for the mother or options for ‘declined to answer’ or ‘don’t know’ selected
• at least 1 box for the father or options for ‘declined to answer’ or ‘don’t know’ selected
• gestational age or gestational age ‘not known’ recorded
Numerator: women at risk of having an infant with SCT offered PND ≤12 weeks + 0 days
gestation

Calculation of gestational age may be based on last menstrual period or ultrasound scan

Numerator: couples at risk of having an infant with SCT offered PND ≤12 weeks + 0 days
gestation

Calculation of gestational age may be based on last menstrual period or ultrasound scan

Numerator definition

Numerator: number of eligible women for whom a NIPT screening result was available at the
day of report.

A conclusive NIPT result can be a higher chance, lower chance or ‘no result’.

The first NIPT sample must be taken ≤ 21 weeks and 6 days of pregnancy.
Numerator: number of women attending an appointment ≤ 3 working days to discuss their
results.

Numerator: number of PND procedures completed ≤ 3 working days.


Denominator definition

Denominator: number of pregnant women booked for antenatal care during the reporting period, excluding wom
• present to service ≥ 23 weeks + 1 day (as they are not part of the eligible population for the screening program
• miscarry between booking and testing
• opt for termination between booking and testing
• transfer out between booking and testing (do not have a result)
• transfer in at ≤ 23+0 weeks of pregnancy who have a result from a screening test performed elsewhere in the N

In addition:
The 20-week screening scan can be completed between 18+0 and 23+0 weeks of pregnancy. For women betw
every effort must be made to accommodate the offer of the screening scan and they should be included in the
service is unable to offer the screening scan, they can be excluded.

The eligibility criteria for entry into the combined screening pathway is a baby’s CRL measurement between 45
to 11 weeks + 2 days to 14 weeks + 1 day (11+2 to 14+1) of pregnancy.

Eligible women is the number of pregnant women booked for antenatal care during the reporting period, exclud
• miscarry between booking and testing
• opt for termination between booking and testing
• transfer out between booking and testing (do not have a result)
• transfer in with a crown rump length (CRL) ≤ 84.0mm (≤ 14+1 weeks) who have a result from a screening tes
in this pregnancy
• present to ultrasound with a CRL between 45.0mm and 84.0mm (≥ 11+2 to ≤ 14+1) where it was not technica
nuchal translucency (NT)
• present to the service (either dating scan or booking) with a CRL > 84.0mm (> 14+1 weeks) - some women m
14+2 weeks by last menstrual period (LMP) but when scanned they are found to be ≥ 14+2 weeks; these wome
no delays in the usual process of booking the dating scan
• have pregnancies of a higher order than twins (for example triplets)
• have a vanished twin where ultrasound shows there is a second pregnancy sac containing a non-viable fetus

For women between ≥ 13+1 and ≤ 14+1 weeks, every effort must be made to accommodate the offer of the co
included in the eligible women. In cases where the service is unable to offer the combined test, these women c

Denominator: eligible women is the number of pregnant women booked for antenatal care during the reporting
without previously having booked for antenatal care excluding women who:
• miscarry between booking and testing
• opt for termination between booking and testing
• transfer out between booking and testing (do not have a result)
• transfer in who have a result from a screening test performed elsewhere in the NHS in this pregnancy
Denominator: number of pregnant women booked in the reporting period who were screened positive (newly di
women already known to be hepatitis B positive with high infectivity as defined as:
• HBsAg positive and HBeAg positive
• HBsAg positive, HBeAg negative and anti-HBe negative
• HBsAg positive where e-markers have not been determined
• having acute hepatitis B during pregnancy
• HBsAg seropositive and known to have an HBV DNA level equal or above 1x10 6IUs/ml in an antenatal sampl

Denominator: eligible women is the total number of pregnant women booked for antenatal care during the repo
labour without previously having booked for antenatal care excluding women who:
• miscarry between booking and testing
• opt for termination between booking and testing
• transfer out between booking and testing (do not have a result)
• transfer in who have a result from a screening test performed elsewhere in the NHS in this pregnancy

Denominator: eligible women is the total number of pregnant women booked for antenatal care during the repo
labour without previously having booked for antenatal care excluding women who:
• miscarry between booking and testing
• opt for termination between booking and testing
• transfer out between booking and testing (do not have a result)
• transfer in who have a result from a screening test performed elsewhere in the NHS in this pregnancy

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

Denominator: eligible women is the total number of pregnant women booked for antenatal care or presenting in
booked for antenatal care in the reporting period excluding women who:
• miscarry between bookingand testing
• opt for termination between booking and testing
• transfer out between booking and testing (do not have a result)
• transfer in who have a result from a screening test performed elsewhere in the NHS in this pregnancy

Denominator: women for whom screening sample received at laboratory is the total number of pregnant women
screening sample was received at the laboratory during the reporting period excluding full blood count samples
antenatal screening

Denominator: number of antenatal screening samples for SCT testing received by the laboratory in the reportin
Denominator: women at risk of having an infant with SCT. This is the total number of women in the reporting pe
affected by, a clinically significant haemoglobin variant where the haemoglobinopathy status of the baby’s biolo
pregnancies by donor egg or sperm where the haemoglobinopathy status of the donor is unknown

Denominator: couples at risk of having an infant with SCT. This is the total number of couples in the reporting p
higher (mother and father results known) of the fetus being affected by a serious haemoglobin disorder (SCT)

Denominator definition

Denominator: number of women with a higher chance combined or quadruple screening test result received by
reporting period, including twin pregnancies, and excluding women who:

- miscarry between receiving a higher chance combined or quadruple screening result and having a NIPT scree
- transfer out between receiving a higher chance combined or quadruple screening result and having a NIPT sc
- have cancer, unless in remission
- received a blood transfusion in the previous 4 months
- had bone marrow or organ transplant
- have immunotherapy in the current pregnancy (excluding intravenous immunoglobulin treatment)
- had stem cell therapy
- have Down’s syndrome or a balanced translocation or mosaicism of T21, T18 or T13
- have a vanished twin pregnancy
Denominator: number of women for whom a higher chance or ‘no result’ NIPT screening result is received by th
reporting period.

Date the maternity service receives the result is counted as day zero.

Denominator: number of PND procedures in women receiving a higher chance or ‘no result’ NIPT screening re

Date the woman receives her result is counted as day zero.


Additional information
The optimal time for completing the screening scan is 18+0 to 20+6 weeks of pregnancy. The scan can be com
weeks for women in any of the following circumstances:

1. When a repeat scan is needed because the image quality of the first scan is compromised by:
• maternal body mass index (BMI)
• uterine fibroids
• abdominal scarring
• baby/babies in a sub-optimal position
A single repeat scan must be offered and completed by 23+0 weeks. The woman should be rescanned on the
a new appointment according to local policy.

2. Where the provider has a pathway in place to offer the 20-week screening scan between 18+0 and 23+0 we
must:
• be agreed with public health commissioners and screening quality assurance service (SQAS)
• facilitate referrals for further investigations and options for pregnancy choices in a timely manner
Ongoing audit of practice must be in place to monitor timeliness of the screening pathway.

3. When women present to the service ≥ 20+6 weeks and the ultrasound department can offer a scan appointm
screening by 23+0 weeks.

Women who decline is the number of eligible women who are offered screening and make a personal informed
accept screening, including women who choose to have private screening and do not wish to have NHS screen

Women should not be excluded but should be accounted for in the commentary if:

• a condition is suspected or identified at the first scan that requires onward referral (for example, anencephaly
• the NT is measured as ≥ 3.5mm and the woman declines blood sampling for biochemical testing before referr
assessment – FASP recommends biochemical testing should be completed where screening is accepted

This requires matched cohort data and follow-up of any missed women
A specialist is a hepatologist, gastroenterologist, infectious diseases physician, or a hepatology nurse specialis
agreed protocol within the clinical team

The effective timeframe for an appointment with a specialist is within 6 weeks of identifying hepatitis B in the cu

This requires matched cohort data and follow-up of any missed women

This requires matched cohort data and follow-up of any missed women

Exclusions
Repeat samples requested because the previous sample was taken too soon after transfusion (less than 3 clea
after last transfusion) are excluded from the numerator as the routine sample should be taken by day 8 at the la

The sample should be taken in accordance with the Guidelines for Newborn Blood Spot Sampling. Further deta
repeat categories are available.

Requires matched cohort data and follow-up of any missed women

Does not need to be matched cohort

Calculation of gestational age may be based on last menstrual period or ultrasound scan

This data does not need to be matched cohort.

Laboratories that serve more than 1 maternity service must report by each maternity service
Clinically significant haemoglobin variants where the baby’s biological father’s status or donor’s status is unkno
• Hb S
• Hb C
• Hb DPunjab
• Hb E
• Hb OArab
• Hb Lepore
• β thalassaemia
• δβ thalassaemia
• α0 thalassaemia (- -/aa)
• Hereditary Persistence of Fetal Haemoglobin (HPFH)
• other haemoglobin variants detected which may result in a serious haemoglobin disorder
• any compound heterozygote or homozygous state of these conditions

Results that mean there is a 1 in 4 chance or higher of the fetus being affected are biological mothers who are
affected by:
• Hb S and baby’s biological father is a carrier or affected by Hb S, β thalassaemia, Hb D Punjab, Hb C, or Hb OAra
• β thalassaemia and baby’s biological father is a carrier or affected by Hb S, β thalassaemia, δβ thalassaemia,
• δβ thalassaemia and baby’s biological father is a carrier or affected by β thalassaemia or Hb Lepore
• Hb Lepore and baby’s biological father is carrier or affected by β thalassaemia, δβ thalassaemia, or Hb Lepor
• Hb DPunjab and baby’s biological father is a carrier or affected by Hb S
• Hb C and baby’s biological father is a carrier or affected by Hb S
• Hb E and baby’s biological father is a carrier or affected by β thalassaemia
• Hb OArab and baby’s biological father is a carrier or affected by Hb S

Other results that mean there is a 1 in 4 chance or higher of the fetus being affected are if:
• both of the baby’s biological parents are at high risk of α 0 thalassaemia
• parents have any other haemoglobin variants detected which may result in a serious haemoglobin disorder

Additional information

The chance cut-off is set at 1 in 150 at term for the combined and quadruple tests. This means women with a r
(between 1 in 2 and 1 in 150) are in the higher chance group. These women must be offered an appointment to
results and the option of NIPT or prenatal diagnosis.
Women with higher chance or ‘no result’ NIPT screening results must be offered an appointment to discuss the
options including prenatal diagnosis. The appointment can be face to face or virtual depending on the woman’s
Data source

Maternity service and ultrasound


department

Maternity service, ultrasound


department and screening
laboratory

Maternity service and screening


laboratory
Maternity service and specialist
services

Maternity service and screening


laboratory

Maternity service and screening


laboratory

Maternity services and newborn


screening laboratories

Maternity service and screening


laboratory

Maternity service and screening


laboratory

Maternity service and screening


laboratory
Maternity service and specialist
SCT counselling services

Maternity service and specialist


SCT counselling services

Data source

Maternity service
Maternity service

Maternity service

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