Infections Group

Our work is focussed on understanding infections in pregnancy and childhood, with an emphasis on prevention of vertical (mother-to-child) transmission, delineating risks for adverse outcomes and addressing key questions central to clinical practice and public health.

We conduct active research, surveillance programmes and projects on established and re-emerging infections including HIV, viral hepatitis, syphilis, Zika virus and other arboviruses, conducted in diverse settings, including the UK, elsewhere in Western Europe, Ukraine, Russia, Jamaica, Haiti, Ecuador, Brazil, Malawi and South Africa.

We also manage and coordinate the Integrated Screening Outcomes Surveillance Service (ISOSS) which monitors the screened for infections in pregnancy (HIV, syphilis, hepatitis B), and the Children's HIV and AIDS Reporting System (CHARS) on behalf of the NHS Infectious Diseases in Pregnancy Screening Programme and NHS England.

Children's HIV and AIDS Reporting System (CHARS)

The Children's HIV and AIDS Reporting System (CHARS) conducts long-term clinical surveillance of children living with HIV in England for the NHS Infectious Diseases in Pregnancy Screening Programme, NHS England and NHS Improvement and the UK Health Security Agency's National Infection Service, with Regulation 3 approval.

The purpose of CHARS is to monitor outcomes and quality of services and to contribute to the national epidemiological monitoring.  The main objectives of the paediatric HIV surveillance are:

• to provide data for public health surveillance of HIV infections among children living with HIV
• to monitor the quality of care of children living with HIV until transition to adult services, including producing quality of care indicators
• to support NHS commissioning of services 

 

 

Integrated Screening Outcomes Surveillance Service (ISOSS)

The Integrated Screening Outcomes Surveillance Service (ISOSS) monitors screening outcomes for the NHS Infectious Diseases in Pregnancy Screening Programme (IDPS) with Regulation 3 approval.

The goal of the ISOSS is to collect, analyse and report obstetric and paediatric data on HIV, syphilis and hepatitis B in pregnant women and children in order to:

• assess key outcomes of the IDPS Programme
• assess the IDPS Programme's impact on prevention of vertically-acquired HIV, hepatitis B and syphilis
• protect the health of women with and infants exposed to these infections

IDPS Clinical Expert Review Panels

The ISOSS team investigate all new vertical transmissions of HIV and syphilis occurring in England.  ISOSS interview all clinicians involved in the care of the mother and baby during and after pregnancy.  Interviews are conducted across specialities including paediatrics, maternity and specialist care.

Detailed anonymised case reports are taken to the IDPS Clinical Expert Review Panels (CERP).  The panels consist of relevant clinical specialists including maternity, laboratory, paediatrics, sexual health services as well as representatives from BASHH and BHIVA.

The purpose of the panels is to:

• establish the circumstances surrounding the transmission
• identify and contributing factors and learning points
• feed recommendations into the IDPS/ISOSS team 

HIV Cohorts

European Pregnancy and Paediatric Infections Cohort Collaboration (EPPICC)

REACH (Russian European Alliance for research among women, Children and adolescents impacted by HIV, TB and HCV)

Zika

ZIKAction

PhD Research Projects

Health and Survival of Children HIV-exposed and Uninfected in the UK 

Laurette Bukasa (student), Prof. Claire Thorne (primary supervisor), Dr Pia Hardelid (subsidiary supervisor), Prof. Mario Cortina-Borja (subsidiary supervisor)

Summary: Treating a woman living with HIV in pregnancy greatly reduces the risk of her transmitting the infection to her baby as well as preventing disease progression. The success of prevention of vertical (mother-to-child) transmission programmes worldwide has been driven by antenatal HIV screening and widespread distribution of antiretroviral drugs in pregnancy. Whilst the number of children who are vertically infected during pregnancy is dramatically decreasing, the population of children who are HIV-exposed and uninfected (CHEU) is increasing.

There is evidence to suggest that CHEU have poorer growth, morbidity and mortality outcomes than children who are HIV-unexposed. The evidence base on the effect of exposures (e.g. to HIV and antiretrovirals) during gestation and in the period following birth is growing, but remains relatively limited with respect to high-income countries.

This project uses data from UK-based surveillance of HIV in pregnancy (ISOSS), specifically data on the pregnancies of women with a known diagnosis of HIV and their children. This population-based data will be used to explore in utero exposures, maternal characteristics and birth outcomes of CHEU over time. The project will also describe and evaluate cancer and death incidence in this population using ongoing data linkage between ISOSS and NHS Digital.

The project will be the first to evaluate the long-term safety of antiretroviral use in pregnancy for CHEU in the UK and provide an evidence base for CHEU health inequalities as they pertain to birth, cancer and mortality outcomes in the UK. Further details about this project can be found on PHE data release register.

Privacy Notice

This research is part of the Population, Policy and Practice Programme at the University College London (UCL) Great Ormond Street Institute of Child Health (ICH).  It uses information collected by the Integrated Screening Outcomes Surveillance Service (ISOSS) to conduct research on pregnant women living with HIV and their children born HIV-free, to understand the health and survival outcomes.  It is led by Laurette Bukasa, under the supervision of Professor Claire Thorne, Dr Pia Hardelid and Professor Mario Cortina-Borja.

1.1 What is this Privacy Notice about?

This privacy policy outlines the purpose of the research and explains how we will collect and use the data for this study.  It also describes how to get further information and what to do if you (or your child) do not want to be part of the study.

1.2 What is this study about?

The purpose of the study is to evaluate associations between factors affecting pregnant women living with HIV and birth and long-term health outcomes (including survival).  The study uses de-identified, linked administrative data from ISOSS in England (cancer and death registrations) and information on pregnancies collected by ISOSS.  ISOSS is a commissioned service by the NHS Infectious Diseases in Pregnancy Screening Programme (IDPS).  

1.3 What is the lawful basis for using this information?

The lawful basis for using information collected routinely for administrative purposes for surveillance and research is the 'public task'.  The public task basis may be found in Article 6(1)(e) of the General Data Protection Regulation, which states: 'Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.'

1.4 What information will we collect about you (or your child) for the study?

Our study uses linked, de-identified surveillance data that is collected from the Integrated Screening Outcomes Surveillance Service (ISOSS) in England.  This study uses data only for children born between 01/01/1990-31/12/2020.  The use of these data will allow us to monitor cancers and deaths in children born HIV-free and evaluate whether there are any associations with maternal HIV infection, specific antiretroviral drugs and other pregnancy or birth outcomes.  We need to evaluate data for the whole population of children born HIV-free in England to account for variations in antivetroviral drugs used in pregnancy.

The research team will have limited access to personal information that could identify you or your child.  The personal identifiers (such as date of birth, NHS number, postcode), have been removed from data that are analysed.  The researchers will use data that has been linked using personal identifiers from ISOSS and civil registration data on cancers and deaths by NHS Digital.  The researchers cannot identify individuals without permissions from the data controller (NHS IDPS).

1.5 How will the information be used?

The linked ISOSS and civil registration data will be used by the study to evaluate whether there are any associations between cancers and/or deaths, maternal HIV infection, specific antiretroviral drugs and other pregnancy and birth outcomes.

Statistical methods will be used to understand patterns in the data and possible associations between cancer and/or deaths and factors occuring in pregnancy.

The findings of the study could be used to provide additional safety information on antivetroviral drug use in pregnancy with respect to long-term outcomes in children.  It may help to improve decision making around HIV treatment in pregnancy for expectant mothers living with HIV.  For example, we will examine whether specific drugs are associated with cancer in children born HIV-free.  The findings of the study may also help improve follow-up of children born to mothers living with HIV with respect to other health outcomes.  For example, we will explore the feasibility of using administrative data to assess health outcomes.

We have safeguards to ensure that the study publications cannot identify an individual (i.e. publication via conferences or other printed media e.g. journals).

Automated decision-making, including profiling, is not used in this study.

1.6 Where will the data be stored? 

The study data will be transferred to the University research team in an encrypted form ('scrambled'), where it will be securely stored in the UCL Data Safe Haven.  The UCL Data Safe Haven is a registered data processor under the terms of the Data Protection Act 1998 (Information Commissioner's Office Data Protection Registration: Z6364106).

The research team have permission to use the data for 3 years (i.e. until November 2025).  It will not be used for marketing purposes, shared with or transferred to any third parties.  The data provided to the team for research will not be transferred to other countries.

1.7 Your rights 

Records held for this research are pseudonymised: researchers are not able to identify which records may belong to you without permission from the data controller.  Consequently, it is not possible for researchers themselves to grant usual data protection rights and nor is automated decision making (including profiling) applicable.

ISOSS providing access to your data is able to uphold some of your rights such as restrict the processing of your data.  For more information on your rights, please consult the governance & data protection notice via the link: https://www.ucl.ac.uk/integrated-screening-outcomes-surveillance/governance-data-protection

In addition, the government department providing access to the records ('NHS Digital'), is able to uphold some of your rights such as your right to request access to your data, rectify your data or restrict the processing of your data.

For more information on your rights, please consult NHS Digital's transparency notice via link: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/gdpr/gdpr-register

1.8 Access to your (or your child's) information in the study

It will not be possible to access your study data from the University research team data because all the personal information will be removed.  You do, however, have the right to access any personal information held about you, have information processed fairly and lawfully and the right to privacy.  These rights are upheld by law and outlined in the Data Protection Act 1998.

1.9 What if I do not want my data (or my child's data) to be used in this study?

The UCL research team will not be able to identify you and cannot remove your records from the study directly at your request.  You have the right to tell NHS Digital if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare.  This is known as a 'patient objection' and 'opting out'.  Opting out of your information being used for research cannot be applied to this study's historic data.  The pseudonymisation of records for this research prevents identification of which historic records may belong to you and their removal.  Please visit NHS Digital's website for further details of how the NHS uses your information and opt out: https://www.nhs.uk/using-the-nhs/about-the-nhs/opt-out-of-sharing-your-health-records   Your choice will not affect the health care or the educational resources you receive.

1.10 How do I contact the Research team (or Data Controller)?

If you have questions or concerns about the study please contact Professor Claire Thorne, who is the primary supervisor for this research and ISOSS Surveillance Lead: Professor Claire Thorne, Professor of Infectious Disease Epidemiology, Population, Policy & Practice Department, W5.02, UCL Great Ormond Street Institute of Child Health, 30 Guilford Street, London WC1N 1EH  Tel: 020 7905 2105  Email: claire.thorne@ucl.ac.uk 

You may also contact the UCL Data Protection Officer: Data Protection and Freedom of Information (FOI) Officer, University College London, Legal Services, 6th Floor, 1019, Torrington Place, London WC1E 7HB  Email: data-protection@ucl.ac.uk

You also have the right  to complain directly to the Information Commissioner's Office, which is an independent regulatory authority set up to uphold information rights.

Additional information/links

Information Commissioner's Office: https://ico.org.uk

ISOSS Team: https://www.ucl.ac.uk/integrated-screening-outcomes-surveillance

Infectious Diseases in Pregnancy Screening Programme (IDPS): https://www.gov.uk/government/publications/integrated-screening-outcomes-surveillance-service-isoss/infectious-diseases-in-pregnancy-screening-programme-isoss

Patient Confidentiality in NHS Population Screening Programmes: https://www.gov.uk/government/publications/patient-confidentiality-in-nhs-population-screening-programmes/nhs-population-screening-confidential-patient-data

UCL's Data Safe Haven: https://www.ucl.ac.uk/isd/services/file-storage-sharing/data-safe-haven-dsh

UCL's Data Sharing Framework Contract with NHS Digital: https://www.ucl.ac.uk/isd/approved-information-governance-documents

Understanding Patient Data: https://understandingpatientdata.org.uk

 

HIV Treatment Evolution in Europe: What It Means For Pregnant Women and Their Infants

Georgina Fernandes (student), Prof. Claire Thorne (primary supervisor), Dr Elizabeth Chappell (subsidiary supervisor), Dr Alasdair Bamford (subsidiary supervisor)

Summary: While there have been major successes in early HIV diagnosis and treatment initiation which have resulted in high rates of viral suppression in pregnancy and low vertical transmisssion rates in Europe, pregnant women remain a priority population for treatment optimisation.

The treatment of HIV in Europe has evolved over recent years to include newer and more potent antiretrovirals with important implications for pregnant women and their infants who have traditionally been viewed as a vulnerable population and therefore excluded from pre- and post-licensure drug trials.  This has meant information to enable women and their health care providers to make informed treatment choices has been limited.  As more pregnant woment are conceiving on antiretroviral therapy, which means the foetus is exposed to antiretrovirals for the entire gestation period, the priorities have shifted to concerns regarding the safety of these antiretrovirals in pregnancy, in particular for newer drugs with limited safety data.

Using individual patient data on pregnant women living with HIV in Europe and their infants, the objectives of this project are to:

1. investigate recent patterns (temporal and geographic) of antenatal ART use (i.e., at conception and in women newly initiating ART)
2. delineate policies and practices around the use of neonatal prophylaxis, particularly risk stratification approaches based on maternal characteristics and treatment
3. assess use (including off-label) of specific antiretroviral regimens, including long-acting injectables, in pregnancy and investigate the associated pregnancy, birth and neonatal outcomes
4. examine the frequency, timing, and type of antiretroviral drug switches in pregnancy, and the consequent maternal and infant outcomes (i.e., virologic suppression at delivery, vertical transmission)

 

 

 

Contacts: