ISOSS congenital syphilis case review report: 2015 to 2020
Published 27 July 2021
Applies to England
This report summarises the findings of the review and investigation of confirmed and suspected congenital syphilis seen in babies born after 1 January 2015 and reported by 30 June 2020 in England. Cases were reported to the Integrated Screening Outcomes Surveillance Service (ISOSS), part of the NHS Infectious Diseases in Pregnancy Screening (IDPS) programme.
A more detailed outline of ISOSS and its functions can be found in the ISOSS HIV report 2021.
In this report we use 2 phrases to refer to different date ranges:
- ‘screening year’ covers 1 April to 31 March
- ‘calendar year’ covers 1 January to 31 December
Summary statistics
In the screening year 2018 to 2019 in England:
- approximately 700,000 pregnant women entered the antenatal screening pathway
- coverage of antenatal screening for human immunodeficiency virus (HIV), hepatitis B and syphilis was over 99%
- 1.52 eligible pregnant women per 1,000 received a screen positive result for syphilis (tables 1 and 2)
- 81.2% of women with a screen positive result for syphilis were seen for screening assessment within 10 working days of result and for onward referral to sexual health services as required, which does not meet the acceptable standard of 97.0% (see standard IDPS-S05)
Table 1: screen positive rates for syphilis in pregnant women, England, screening year 2018 to 2019
Region (returns included out of returns expected) | Women tested | Screen positive women | Screen positive women (rate per 1,000 women tested) | Confirmed screen positive women | Confirmed screen positive women (rate per 1,000 women tested) | Screen positive women requiring treatment | Screen positive women requiring treatment (rate per 1,000 women tested) |
---|---|---|---|---|---|---|---|
London (26 out of 26) | 145,716 | 312 | 2.14 | 309 | 2.12 | 128 | 0.88 |
Midlands and East (41 out of 41) | 197,311 | 330 | 1.67 | 329 | 1.67 | 152 | 0.77 |
North (41 out of 43) | 177,934 | 261 | 1.47 | 259 | 1.46 | 127 | 0.71 |
South (36 out of 36) | 155,621 | 125 | 0.80 | 125 | 0.80 | 63 | 0.40 |
England (144 out of 146) | 676,582 | 1,028 | 1.52 | 1,022 | 1.51 | 470 | 0.69 |
For table 1, known false positive results are not included in the number of screen positives. ‘Confirmed syphilis positive’ excludes women who are found to have a treponemal infection that is not syphilis.
Screen positive rates are calculated as the total number of women with a screen positive result (newly positive or previously known diagnosed) per 1,000 women tested.
Table 2: breakdown of women who screen positive for syphilis, England, screening year 2018 to 2019
Breakdown of screen positives | Screen positive women | % of total |
---|---|---|
Newly diagnosed requiring treatment | 324 | 31.2 |
Previously diagnosed requiring treatment | 149 | 14.4 |
Previously diagnosed not requiring treatment | 554 | 53.4 |
Other treponemal infections | 6 | 0.6 |
Unknown | 4 | 0.4 |
Total screen positive women | 1,037 | 100.0 |
Table 2 includes data submitted by 145 out of 146 maternity services in England.
Table 3: trends in screen positive rates for syphilis in pregnant women, England, screening year 2016 to 2017 to screening year 2018 to 2019
Measure | 2016 to 2017 | 2017 to 2018 | 2018 to 2019 |
---|---|---|---|
Returns included out of returns expected | 91 out of 145 | 124 out of 147 | 144 out of 146 |
Screen positive women (rate per 1,000 women tested) | 1.31 | 1.39 | 1.52 |
Screen positive women requiring treatment (rate per 1,000 women tested) | 0.56 | 0.53 | 0.69 |
For table 3, known false positive results are not included in the number of screen positives.
Rates for syphilis are calculated using a combination of data from:
- standard IDPS-S03 on syphilis coverage, to provide numbers tested
- standard IDPS-S05c to provide the number of screen positive women
Data is only included if maternity services provided completed data for both standards.
ISOSS congenital syphilis review
ISOSS conducts population level surveillance of confirmed or suspected congenital syphilis. This data collection started in December 2019 and is conducted for any child born in England, following established methods used by ISOSS for monitoring vertical transmissions of HIV.
Clinicians and care providers were asked to report retrospectively any cases of suspected or confirmed congenital syphilis dating back to 1 January 2015.
A suspected case of congenital syphilis is where maternal treatment in pregnancy was inadequate or unconfirmed and the child was tested and/or treated but found not to be a confirmed case.
Dataset
The ISOSS team worked with the IDPS programme and Public Health England (PHE) National Infection Service (NIS) sexually transmitted infection (STI) teams to review the dataset used during the previous audits including the surveillance of antenatal syphilis screening (SASS) study and previous paediatric surveillance of incidence of congenital syphilis (see Simms I, Evans B and others, 2017 to establish a bespoke dataset for collating maternal and paediatric data on syphilis cases in ISOSS.
The dataset was designed to collect data on the woman’s journey from her maternity booking, screening, referral and care in sexual health services, to the birth and follow up of the infant. For cases of infants with confirmed congenital syphilis, the data would incorporate all maternal care information.
Interviews
The ISOSS team interviewed clinicians involved in the care of the woman and baby during and after pregnancy. An average of 3 interviews were conducted per pregnancy, starting with the reporting paediatrician and expanded to include maternity, sexual health services and others as required.
Where care was provided by multiple services, the process was repeated for each service to make sure as much information was collected as possible. This included contacting adoption services, medical advisors and safeguarding midwives where necessary.
Findings
There were 65 babies born in England after 1 January 2015 with congenital syphilis reported to ISOSS by the end of June 2020 (figure 1). Of these:
- 24 infants with confirmed congenital syphilis were reported and investigated by the ISOSS team
- 41 infants were reported with suspected congenital syphilis that was not confirmed but the infants were treated and/or tested owing to inadequate or unconfirmed maternal treatment during pregnancy
As this was a retrospective review, it is possible that numbers, particularly in the earlier period, may be underreported.
Infants with confirmed congenital syphilis
There were 24 infants with confirmed congenital syphilis born in England. The highest number (9 cases) was reported in those born in calendar year 2019 (table 4), however this includes a set of twins.
Notifications came directly from providers following a communication from the screening programme via SQAS and ISOSS communication with paediatric service providers. Some notifications were also received from the PHE reference laboratory.
Table 4: confirmed cases of babies with congenital syphilis in England by calendar year of birth
Year of birth | Number of cases | Number of births | Rate per 1,000 births |
---|---|---|---|
2015 | 1 | 667,351 | 0.001 |
2016 | 5 | 666,052 | 0.008 |
2017 | 5 | 649,473 | 0.008 |
2018 | 3 | 628,171 | 0.005 |
2019 | 9 | 612,851 | 0.014 |
2020 | 1 | Not available | Not available |
For table 4, Office for National Statistics (ONS) data was used for number of births per calendar year. ONS had not published 2020 data at the time of this report.
For all 24 infants diagnosed with congenital syphilis, screening was offered and accepted by all women.
For 15 infants, the women had negative antenatal screening results, meaning the women became infected with syphilis later during their pregnancy. Of these women:
- 2 presented to sexual health services with symptoms postnatally
- 2 had a screen positive result in a subsequent pregnancy
- 10 were diagnosed following their symptomatic infant’s diagnosis
- 1 was diagnosed following a stillbirth investigation
For 9 infants, the women had positive antenatal screening results. For one woman, screening took place during labour following a concealed pregnancy and the result was not returned until after delivery.
For the other 8 women who received a positive antenatal screening result, 3 women did not attend their sexual health service appointment, despite being referred in line with guidance. For one of these 3 women, this resulted in a stillbirth attributed to congenital syphilis. Of the 5 women who attended sexual health services following referral:
- 2 booked late for antenatal care (over 30 weeks gestation) and delivered before the treatment could have maximum impact on the infection
- 2 reported a penicillin allergy and were treated with an inappropriate alternative antibiotic
- 1 was successfully treated but became re-infected during the pregnancy
Demographics
Among the 24 infants with confirmed congenital syphilis, there was one set of twins and one set of siblings (24 infants to 22 women). There were 22 live births and 2 stillbirths reported.
Most infants (87.5%) were born to women who were born in the UK, with the remaining infants born to women who were born in Romania. The majority (95.8%) were born to white women. Median maternal age was 22 years at delivery (interquartile range (IQR) 21 to 25 years).
Adverse social circumstances at the time of the pregnancy were reported in more than half of cases, with many women experiencing multiple issues (table 8).
Table 5: number of reported infants with congenital syphilis by region of child’s birth
Region of child’s birth | Number of infants | Percentage of cases (%) |
---|---|---|
London | 5 | 20.8 |
Midlands and East | 2 | 8.3 |
North | 10 | 41.7 |
South | 7 | 29.2 |
Table 6: number of previous livebirths
Previous livebirths | Number of cases | Percentage of cases (%) |
---|---|---|
0 | 10 | 47.6 |
1 | 5 | 23.8 |
More than 2 | 6 | 28.5 |
For table 6, information was missing for 3 infants.
Table 7: number of reported infants with congenital syphilis by timing of woman’s diagnosis
Timing of woman’s diagnosis | Number of infants | Percentage of cases (%) |
---|---|---|
Diagnosed antenatally (screening or sexual health services) | 8 | 29.2 |
Diagnosed postnatally (includes one woman screened in labour) | 16 | 70.8 |
Table 8: complicating issues reported for women
Complicating issues reported | Number of cases |
---|---|
Any issue reported | 14 (58%) |
Safeguarding / social services involvement | 10 |
Foster care / adoption | 6 |
Mental health issues | 6 |
Drug / alcohol misuse | 4 |
Insecure housing | 7 |
Intimate partner violence | 6 |
Sex work | 2 |
Language issues (translation required) | 2 |
Penicillin allergy | 3 |
For table 8, issues overlap so may appear as more than one issue per woman.
Use of British Association for Sexual Health and HIV (BASHH) birth plan
A birth plan template has been available as part of the BASHH clinical guidelines for syphilis since 2015.
Of the 7 cases of congenital syphilis where the woman was diagnosed antenatally:
- a BASHH birth plan was used in 1 case
- a local birth plan was used in 3 cases
- a birth plan was not used in 3 cases
There was one woman who presented in labour with no antenatal care who accepted screening and was found to be positive for syphilis. The diagnosis of infection was made following the delivery of the baby and so there was no opportunity to utilise the BASHH birth plan in its intended form. The infant was diagnosed and treated within one week of birth.
Infant outcomes
Of the 22 live births where a diagnosis of congenital syphilis was made, 12 infants were diagnosed within a month of birth (table 11).
In 2 cases, infants were diagnosed over 12 months of age. In one case, the diagnosis was made after the woman screened positive for syphilis in a subsequent pregnancy and in the other case the infant was symptomatic.
Table 9: infant outcomes
Infant outcome | Number of infants | Percentage of infants (%) |
---|---|---|
Livebirth | 22 | 91.7 |
Stillbirth | 2 | 8.3 |
Table 10: gestation at delivery
Gestation | Number of infants | Percentage of infants (%) |
---|---|---|
Term (greater than or equal to 37 weeks gestation) | 12 | 50.0 |
Preterm (less than 37 weeks gestation) | 12 | 50.0 |
Table 11: age of infant at diagnosis (livebirths only)
Age of infant | Number of infants | Percentage of infants (%) |
---|---|---|
Less than 1 month | 12 | 54.5 |
1 to 6 months | 8 | 36.4 |
6 to 12 months | 0 | 0 |
Greater than 12 months | 2 | 9.1 |
The range of ages of the infants at diagnosis was 0 months to 22 months.
Table 12: clinical presentation of the infant at diagnosis (livebirths only)
Clinical presentation | Number of infants | Percentage of infants (%) |
---|---|---|
Symptomatic at diagnosis | 21 | 95.5 |
No clinical indications | 1 | 4.5 |
Half of the infants diagnosed with congenital syphilis were born prematurely (table 10). For 3 infants this was a spontaneous delivery, and 5 were induced or delivered by emergency caesarean section due to concerns about fetal wellbeing.
In 21 cases, the infants were symptomatic at presentation (table 12) with a range of symptoms reported. These varied in degrees of severity from mouth blisters to multi-organ damage and notched teeth.
Most of the infants were treated for syphilis by the time of the report, but a number remain under paediatric clinical follow up for other conditions (liver and lung problems), indicating possible long-term health implications.
Commentary
Screen positive maternity reports
ISOSS prospective data collection on women with a screen positive result for syphilis in England began in 2020, so there is not yet enough data to know whether the transmitting group discussed in this report is representative of the syphilis screen positive population. As ISOSS syphilis maternity data collection does not collect data on women booked prior to 2020, contextual information for maternity screen positive for 2015 to 2019 is also not available.
Prospective data collection will be reported to the ISOSS reports going forward.
Inequalities
There are significant social issues and inequalities affecting over half the women in this group (table 8). The issues presented are likely to be an underestimate as the information provided is only what was available to clinicians at the time. When the enhanced data collection is complete, there are plans to look at how these complicating issues intersect with maternal demographics and whether there are regional disparities and patterns.
Of note, there are a number of looked after children already in foster care or adopted before, or not long after, their diagnosis. Coordination and communication between agencies are clearly important, especially considering the younger age of many of these women and their reproductive health in the future.
Data collection observations
Respondents reported low awareness about the BASHH syphilis birth plan and how it is designed to be used across departments, such as sexual health services, maternity and paediatrics, to underpin communications and support appropriate neonatal care.
This was also seen in services that reported having well established multidisciplinary teams (MDTs). Stakeholders reported that pregnancy specific guidelines from BASHH that cover recommended paediatric follow up schedules would be beneficial, like those produced by the British HIV Association (BHIVA) for pregnant women living with HIV and their babies. BASHH are currently producing specific guidelines to support the care of women with syphilis in pregnancy and care of the infant. These are expected to be published in 2021.
Adverse pregnancy outcomes: stillbirths and neonatal deaths
Untreated syphilis is known to be commonly associated with adverse pregnancy outcomes including miscarriage and stillbirth (see the World health organisation (WHO) strategy for global elimination of syphilis). Data on miscarriages following a screen positive result will be captured through the maternity data collection that will be able to track pregnancy outcomes.
ISOSS plans to work with MBRRACE-UK to link data reported for stillbirths and neonatal deaths where congenital syphilis is reported as a cause or contributing factor. Once appropriate agreements are in place, it is expected that the number of stillbirths reported during the 2015 to present time frame will increase. The data in the ISOSS report will be updated to reflect this.
Recommendations
Detailed anonymised case reports were taken to the congenital syphilis Clinical Expert Review Panel (CERP). The panel consists of relevant clinical specialists including maternity, laboratory, paediatrics and sexual health services. They meet to establish the circumstances surrounding each transmission and any contributing factors and to identify learning points to inform national guidance and policy.
It is recognised that the recommendations in this report were made by the members of the CERP and not directly by the IDPS programme. Some of the recommendations fall outside of the screening pathway but remain within the scope of ISOSS.
The terms of reference for the CERP includes the expectation to act on findings in this report and make recommendations to strengthen policy and practice at a national level to improve the prevention of congenital syphilis infection. This includes the screening pathway and wider clinical care for women and their infants. Representation on this panel includes members from BASHH who produce clinical care guidelines.
Recommendations and findings are presented below and will be shared with colleagues in the PHE NIS STI team and the BASHH pregnancy guidelines group.
The recommendations from the CERP will inform the IDPS programme formal project and associated workstreams on the maternity strand pillar of the PHE syphilis action plan.
The ISOSS CERP met to discuss the 24 confirmed cases of congenital syphilis. Recommendations and findings in this report were made based on the discussion points of each case.
Recommendations and findings are grouped into 6 themes:
- guidelines or policy changes
- sexual health in pregnancy
- laboratory testing
- delivery of care and engagement with services
- treatment
- raising awareness of congenital syphilis
In total, 13 separate recommendations and findings were made by the group, some issues appeared repeatedly during the case reviews.
Guidelines and policy considerations
One of the main findings from the CERP was the need to raise awareness of the guidelines for syphilis infection in pregnancy and care of the newborn after delivery. This will be strengthened by the syphilis action plan.
On review of the cases, there were multiple instances of women presenting to the maternity service with symptoms of a STI that were not referred to sexual health services. Diagnoses by maternity services of vulval lesions and ulcers as herpes, without laboratory confirmation, was also seen.
In a number of cases, there was a lack of awareness or misunderstanding of the need to follow up babies born to women who had received treatment for syphilis in pregnancy, regardless of test results and treatment at birth.
It was noted that in several cases, women presented for antenatal care after 30 weeks gestation, or presented in labour having not accessed antenatal care. Although screening samples were obtained in these cases, failure to promptly follow up and action these results, and failure to communicate the urgency of the testing to the laboratory services, impacted on the ability to provide appropriate treatment to women and babies.
In the instances where local review of congenital syphilis cases took place, these did not always involve all relevant specialities involved in the care of the woman and child. This led to missed valuable insights, information and shared learning. In some cases, maternity services had only become aware of the congenital syphilis case when contacted by the ISOSS team for pregnancy information. This shows that improvements are needed in communication, particularly when multiple services are involved, to support an opportunity for shared learning.
Recommendation 1
Strengthen and promote guidelines for health care staff to increase retesting following the identification of women who may have been exposed after a negative screening test result.
Recommendation 2
Promote the ‘negative now’ message to all women following a negative screening test result.
Sexual health in pregnancy
In the majority of cases (15 out of 22), syphilis infection occurred in women who initially received a negative antenatal screening result. Work is needed to enhance the knowledge of women and their partners and those providing maternity care around the importance of sexual health in pregnancy.
Routine rescreening in pregnancy is not supported by the UK National Screening Committee (UK NSC), but rather targeted retesting following the identification of women who may have been exposed to risk, including those who:
- change their sexual partner
- inject drugs
- are a sex worker
- have an infected partner
- have a partner who is sexually active with another person
- are diagnosed with a STI
Work is needed to support maternity providers to facilitate open discussions with women that will identify those for whom retesting would be of benefit, and to empower women to request this testing. In many cases, women had risk factors that would have indicated the need to offer retesting, however these were either missed or not disclosed to maternity staff.
Recommendation 3
Referral should be made to sexual health services at any point in pregnancy and irrespective of antenatal HIV, hepatitis B or syphilis screening results for women presenting with a suspected or confirmed STI in pregnancy.
Recommendation 4
Information should be available for women and their partners about protecting themselves from infections in pregnancy, and sexual health advice. This should include how to access sexual health services.
Laboratory
It is recognised that congenital syphilis is a rare occurrence and can vary in clinical presentation. Whilst congenital infection is often suspected in these cases, the request for serology testing utilising the ‘TORCH screen’ does not test for syphilis infection. The proposition around including syphilis testing when considering congenital infection has been highlighted and published previously (see Penner J and others, 2021).
The need to raise awareness around appropriate testing, understanding what is included when requesting a collection of tests, and the provision of sufficient clinical details to laboratories was apparent. If more clinical information had been provided alongside such requests for testing, this may have facilitated additional support from laboratory staff to recommend relevant tests and help expedite a diagnosis.
Delivery of care and engagement with services
A lack of a well-functioning, well represented MDT was a recurrent feature in cases. MDTs are key in the development of clear care plans for both woman and baby, and for communicating plans to all relevant care providers.
In 2 cases, children were tested and diagnosed with congenital syphilis following the woman’s diagnosis in a subsequent pregnancy when she received a positive antenatal screening result. Delays in testing these children following the women’s diagnosis were also seen.
Where a diagnosis of syphilis in the woman came postnatally, there were instances where the woman did not engage with or attend sexual health services for treatment, but was attending other departments, such as accident and emergency (A&E) or paediatric services with the infant. It is important to try to engage with these women at every opportunity to ensure she receives the necessary treatment for her infection.
General issues in following up women postnatally where testing occurred close to or following delivery were seen. Issues of information sharing with primary care and responsibility in communicating and following up results were apparent.
Problems with communication and collaboration between sexual health services, maternity providers and primary care were repeatedly seen. In one case, a vulnerable woman was not treated or followed up appropriately due to the recommissioning of services in the local area and breakdown of usual processes and communication. This also highlights the need for representation by sexual health services at MDT meetings to strengthen communication links and collaborative working.
Identifying vulnerable women and situations where there may be difficulties in accessing sexual health care, such as travel requirements, and producing an individualised care plan for such women to ensure the necessary treatment is received should be of paramount importance.
Recommendation 5
Strengthen the importance of MDT working and communication to ensure that care plans for women and their babies are available in the woman’s notes and are accessible by paediatricians in advance of the baby being born.
Recommendation 6
Promote the use of birth plans, including the BASHH birth plan, to facilitate appropriate initial and follow up care of infants, in line with BASHH guidelines, for all women who screen positive for syphilis.
Recommendation 7
The screening team must be informed when a woman has not engaged with sexual health services following referral for a positive screening result. This is so that care plans and alerts can be in place to support appropriate treatment for the woman and infant if and when she engages with maternity or other hospital services.
Recommendation 8
Strengthen in the IDPS programme handbook the importance of using formal interpretive services (not friends or family) for women who do not speak fluent English to inform of positive screening results.
Recommendation 9
Provide guidance on the importance of following up screen positive results for postnatal women, including women who are screened in labour.
Recommendation 10
To discuss with newborn infant physical examination (NIPE) screening programme team about the ability to raise awareness to check for IDPS results in a woman’s notes when the infant is examined.
Recommendation 11
Review the care pathway for women who screen positive for syphilis. It is essential that feedback from sexual health services is received and care plans are in place for the woman and infant before delivery, including where a woman did not require treatment, or where a woman did not engage for treatment.
Recommendation 12
Review pathway in relation to urgent screening of women who present in labour unbooked or with no reliable evidence of screening during the pregnancy, including in the guidance in the laboratory handbook.
Treatment
Congenital syphilis cases were seen several times when women had reported penicillin allergy following their diagnosis with syphilis during pregnancy. Referral to allergy services was not seen during pregnancy, with more than one woman’s penicillin allergy report being disproven postnatally.
Mistreatment of syphilis in penicillin allergic women with macrolides was seen. Guidance provided by BASHH was updated in 2019 to state that this treatment is ineffective, and describes appropriate alternative treatment.
Raising awareness of congenital syphilis
A general lack of awareness around syphilis infection in pregnancy, congenital syphilis and risk factors associated with infection was noted throughout and by many medical specialities. It was suggested by members of the group that a campaign similar to Children’s HIV Association’s (CHIVA) ‘don’t forget the children’ messaging would be beneficial.
Several cases of congenital syphilis infection were first identified via radiology and the finding of bony lesions that led the radiologist to suggest testing for syphilis. Such experiences and recognition of good practice should be disseminated for shared learning across specialities.
Recommendation 13
Support the ISOSS team and CERP members in raising awareness of congenital syphilis. This can be done via attendance and presentations at conferences, articles in journals, newsletters and engagement with different networks.
Next steps
It is too early to establish if there is a rising rate of congenital syphilis in England, and the continued monitoring of pregnancy outcomes by ISOSS will be essential in identifying any trends. However, with the increase in syphilis infection seen in the general population, it would not be surprising to see a rise in congenital syphilis cases. Currently, the data shows that the incidence of congenital syphilis in England is below the WHO elimination threshold of less than 0.5 per 1,000 live births.
Raising awareness, both of sexual health in pregnancy with women, and of the identification of cases by clinicians, will be vital in improving the outcomes for women and their babies.
Data collection
Screening standards data
Quality assurance of the IDPS programme includes maternity services reporting screening data, such as metrics against national screening standards and key performance indicators (KPIs).
An annual standards report presents data for each of the screening standards for the IDPS programme in England and is presented jointly for all 3 national antenatal screening programmes.
Data tables with maternity service level data are shared with the screening quality assurance service (SQAS) and screening and immunisation teams (SITs) in NHS England and Improvement (NHSEI) to support quality assurance and inform commissioning processes.
National and regional data is also shared with PHE’s NIS HIV and STI department to include in the annual health protection reports.
Background
PHE published the syphilis action plan in June 2019, bringing together existing recommendations for PHE and partner organisations to address the continued increase in syphilis diagnoses.
There were concerns about the increasing rate of syphilis in the general population, especially in UK born women, where the rate had increased rapidly since 2015. There was also a perceived increase in the rate of congenital syphilis seen in infants being reported by clinicians.
As there had been no systematic reporting system for congenital syphilis in England, it was difficult to establish if this concern was confirmed or not. A need for robust recording of screening outcomes in relation to syphilis was acknowledged and was built into ISOSS.
Syphilis is not a notifiable disease in the UK and good quality surveillance relies on goodwill and relationships built over many years with NHS respondents. Previous data on rates of congenital syphilis was established through studies and published papers including:
- Townsend CL and others, Syphilis screening in pregnancy in the United Kingdom, 2010-2011: a national surveillance study (2017)
- Simms I and others, The incidence of congenital syphilis in the United Kingdom: February 2010 to January 2015 (2017)
The retrospective collection of data presented will report the rates of congenital syphilis seen in England, dating back to 2015. Due to the nature of this data collection, it is acknowledged that there may be recall bias.
Prospective monitoring for all women who have a screen positive result for syphilis in pregnancy by ISOSS commenced in June 2020, collecting data on women who booked for antenatal care from 1 January 2020. This is the first time that population level surveillance data will be available for all women who have a screen positive result for syphilis in pregnancy, and the outcomes for infants born to women who require treatment for syphilis during pregnancy. ISOSS will also continue to receive reports of infants seen with suspected or confirmed congenital syphilis where a maternal diagnosis of syphilis was not reported prior to delivery.
Governance
PHE has permission from Parliament to collect this data without the need to seek consent from individual patients. Patient data is collected under legal permissions granted to PHE under regulation 3 of the Health Service (Control of Patient Information) Regulations 2002. The service also conforms to the requirements of the Data Protection Act (2018).
Data protection is an important priority for ISOSS, and the service does not share patient-identifiable information unless specific data sharing agreements are in place. Where data is shared, minimal identifiers are included.
All requests for ISOSS data for potential research purposes are reviewed by the PHE antenatal and newborn (ANNB) screening research advisory committee (RAC).
Congenital syphilis CERP members
The congenital syphilis CERP members are:
- Sharon Webb: IDPS Programme Manager, PHE (to November 2020)
- Jenny Neal: IDPS Programme Manager, PHE (from February 2021)
- Laura Smeaton: IDPS Project Coordinator, PHE
- Sarah Dermont: IDPS Project Coordinator, PHE
- Pat Schan: IDPS Programme Clinical Advisor and Project Lead, PHE
- Professor Claire Thorne: Professor of Infectious Disease Epidemiology, Population, Policy and Practice Department, University College London (UCL) Great Ormond Street (GOS) Institute of Child Health
- Helen Peters: ISOSS Manager, UCL GOS Institute of Child Health
- Kate Francis: ISOSS Coordinator, UCL GOS Institute of Child Health
- Dr Shalini Andrews: GUM Consultant, Central and North West London NHS Foundation Trust
- Dr Sara Eisen: Consultant Paediatrician, University College London Hospitals NHS Foundation Trust
- Anette Elbech: Infectious Diseases Specialist Midwife, Chelsea and Westminster Hospital NHS Foundation Trust
- Dr Helen Fifer: IDPS Laboratory Advisor and NIS Microbiologist, PHE
- Dr Shazia Hoodbhoy: Consultant Neonatologist at The Rosie Hospital, Cambridge University Hospitals NHS Foundation Trust
- Dr Chrissie Jones: Consultant in Paediatric Infectious Diseases, University of Southampton and Southampton Children’s Hospital
- Professor Margaret Kingston: Consultant Physician in genitourinary medicine, Associate Medical Director, Manchester University Hospitals NHS Foundation Trust
- Dr Paddy McMaster: Consultant in Paediatric Infectious Diseases, North Manchester General Hospital Women and Children’s, Manchester University Hospitals NHS Foundation Trust
- Ailsa Pickering: Clinical Nurse Specialist, Great North Children’s Hospital, The Newcastle Upon Tyne Hospitals NHS Foundation Trust
- Alison Perry: Specialist Screening Midwife, Leeds Teaching Hospitals NHS Trust
- Dr Cara Saxon: Consultant Physician in Genitourinary Medicine, Manchester University Hospitals NHS Foundation Trust
- Dr Judith Timms: IDPS Programme Clinical Advisor, Laboratory Lead, PHE
- Dr Rachel Bower: Consultant Community Paediatrician and Medical Advisor to the Adoption and Permanence Panel
- Dr Dyan Dickins: Consultant Obstetrician, Liverpool Women’s NHS FT