Projects

A range of difficulties that newborn babies face around the time of birth can have a long-lasting impact on their ability to achieve their full potential in life. With more than a third of children being assessed as not ‘ready for school’ at school entry, it is important to identify children who might need assessment and support for education as early as possible. Difficulties children face at birth can be medical problems, consequences of problems their mothers faced before or during pregnancy or social or structural barriers their communities face.

Using administrative data, this project aims to evaluate the impact of newborn medical and social adversity and school readiness in England and Ontario.

Three workstreams are proposed: i) a population birth cohort study in England evaluating the intersectional relationship between newborn medical morbidities, maternal psychosocial adversity and social/structural determinants and school readiness ii) a comparative population birth cohort study in Ontario evaluating the intersectional relationship between newborn adversities and school readiness iii) a scoping review of models of early years support for high-risk newborns.

Contact: Rashmi D'Souza

The COVID-19 pandemic had severe implications for healthcare systems worldwide. Research was focused on adults when COVID-19 emerged, but limited attention was paid to children. This was because initial research showed that children were generally less likely to experience severe illness upon infection with SARS-CoV-2, hospitalisation and deaths compared to adults. However, children were still affected by the pandemic. There remains a gap in the literature on children's healthcare use related to COVID-19. This project, therefore, wants to address this gap so that we can understand the unique and evolving healthcare needs of children. 

Research on long-term symptoms following viral respiratory infections, especially in children, is limited, leaving gaps in understanding the burden of post-acute infection syndrome. Children primarily rely on primary care, but the impact of COVID-19 on their healthcare use post-infection, in relation to sociodemographic factors and SARS-CoV-2 variants, remains poorly understood; also, how this differs from other common respiratory infections. Whether COVID-19 vaccines reduced children’s need for primary care post-infection remains unexplored. Research gaps that persist in the literature on this topic: 

• Research on long-term symptoms following viral respiratory infections, especially in children, is limited, leaving gaps in understanding the burden of post-acute infection syndrome.
• Children primarily rely on primary care, but the impact of COVID-19 on their healthcare use post-infection, in relation to sociodemographic factors and SARS-CoV-2 variants, remains poorly understood; also, how this differs from other common respiratory infections.
• Whether COVID-19 vaccines reduced children’s need for primary care post-infection remains unexplored.

These gaps will be addressed by investigating the following: 

1. Describe trends over time in the recording of symptoms of post-acute infection syndrome (PAIS) in children, including the periods before, during, and after the H1N1 influenza pandemic and the COVID-19 pandemic, and how these vary by child characteristics.
2. Describe changes in rates of primary and secondary care three months before and up to three months after a SARS-CoV-2 infection in children, and how these vary according to child characteristics and by SARS-CoV-2 variant. Additionally, how this compares to similar periods of Influenza and RSV.
3. Evaluate the effectiveness of COVID-19 vaccines in reducing primary care use in children following SARS-CoV-2 infection

Administrative data holds a large potential to harness meaningful insights into children's health. The use of secondary care data is more common; however, primary care data of children remains largely unexplored. This project focuses on primary care use in children, which is where children predominantly present when requiring healthcare attention. 

In this project, we will use the Clinical Practice Research Datalink (CPRD), which collects anonymised primary care data from general practices in England. CPRD covers sociodemographic information on individuals, clinical information recorded during GP visits, referral information, prescription issue data, and vaccination history, among other data. This data will be linked to the Index of Multiple Deprivation, which will serve as a proxy for an individual's deprivation level. Additionally, the primary care data is linked to the national COVID-19 surveillance dataset, SGSS, which is a dataset of positive SARS-CoV-2 tests recorded in England during the pandemic. Lastly, the primary care data will also be linked to secondary care data from the Hospital Episode Statistics datasets. The data will be stored, managed, cleaned and analysed within a secure server. 

Contact: Vishnuga Raveendran

Health and social research have benefited from linking data that are routinely collected for other purposes. However, improved availability of population-based data via data linkage did not translate into more equitable health in the UK. The problem of bias in health data linkage is well documented. Linkage is not always straightforward due to data quality issues, which become more complex as more datasets are linked together.

Take ethnicity as an example, from brain imaging, clinical trials to longitudinal cohort, ethnic minorities are routinely under-represented in health research. People from ethnic minority groups have an increased likelihood to have more errors in their data, such as misspelt names, omitted information, and missing data. Methods to reduce such linkage biases, such as ethnic bias, is a key priority in improving data linkage quality. Such that biases and exclusions in the data could be minimised, and that biases would not be amplified and fed on to drive diagnosis, health system planning, and policymaking.

This project plans to propose and evaluate the use of complex probabilistic linkage in reducing linkage biases against minoritized ethnic populations in administrative and longitudinal data.

• Avon Longitudinal Study of Parents and Children (and Synthetic data)
• UK Longitudinal Linkage Collaboration linked longitudinal cohorts and health administrative data
• Virus Watch linked cohort and health administrative data.
• Open-source data (voting registry, WikiData, web-scraped data)

The research team:

Katie Harron

Joseph Lam

If you would like to know more about the project, please contact Joseph Lam via email (joseph.lam.18@ucl.ac.uk).

Children in contact with social services often face significant risks to their social, health, and educational outcomes. While national and local organisations gather extensive data on these children, the use of these administrative datasets in research is still limited. This means that valuable insights that could inform policies and interventions remain undiscovered, leaving gaps in our understanding of the challenges faced by these children and how to address them. This project is essential to improve the use of existing data and ensure research focuses on the issues most relevant to practitioners, policymakers, and the families involved.

The ADR England Research Community Catalyst for Children at Risk of Poor Outcomes is designed to build a community of researchers, analysts, and policymakers who are dedicated to using administrative data to better understand and improve outcomes for children in need. By bringing together experts from different disciplines, the project aims to foster collaboration and strategic leadership, maximising the use and impact of data. This community will serve as a national resource, sharing knowledge, best practices, and setting research priorities that align with the needs of children, families, and service providers.

1. Provide national strategic leadership: Synthesizing existing research and working closely with stakeholders, the project will outline research priorities and produce an open-access report identifying barriers and strategies to overcome them.
2. Build research capacity: A "one-stop shop" online platform will be created for child-focused researchers, alongside webinars and outreach to attract and support new members and strengthen connections among current data users.
3. Strengthen the research community: Networking events and workshops will promote collaboration among experienced and new researchers, focusing on flagship datasets and best practices.
4. Research fellowship: This project includes an embedded research fellowship to use the ADR flagship datasets to support the different objectives.

The project aims to develop a well-connected, knowledgeable community focused on using administrative data to answer pressing questions about children at risk of poor outcomes. Through this work, it is anticipated that research agendas will more closely reflect the needs of stakeholders and that new funding opportunities will emerge to support evidence-based interventions in early intervention and children’s social care.

The project will use de-identified administrative data from ADR England’s flagship datasets, specifically, ECHILD database.

Led by Dr Lucy Griffiths (Swansea University) and Professor Karen Broadhurst (Lancaster University), the project team includes experts from five universities. At GOS ICH, Prof Katie Harron and Dr Eliazar Luna are involved in the project. More information about the project can be found here or by contacting Prof Katie Harron or Dr Eliazar Luna.

The UKRI Population Mental Health Improvement Consortium brings together expertise and insight from across research, public health and community organisations.  Its aim is to find innovative and inclusive ways to improve the mental health of people and reduce health inequalities through the development and evaluation of long-lasting and sustainable interventions.

One in six adults in England have a mental health condition, and mental distress and ill health are associated with significant disability, sickness absence, unemployment and suicide attempts. 

The Consortium will create new opportunities for population-based improvements in mental health across the country, focusing on children and young people, suicide and self-harm prevention and multiple long-term conditions.

The theme includes researchers at:

• King's College London
• University College London
• Middlesex University
• Swansea University
• Ulster University
• The University of Manchester
• Birmingham Women’s and Children’s NHS and Applied Research Collaboration West Midlands

It works closely with stakeholders across public health, local government and voluntary organisations and people with lived experience of adversities which impact mental health. It includes partnerships with Thrive LDN, and other organisations. This will allow for the identification and evaluation of population-level interventions which hold the greatest promise for the improvement of mental health, and bring benefits through the development of practice-based evidence and concerted knowledge exchange.

https://www.ukri.org/news/35-million-investment-to-improve-population-wide-health/

MAGENTA is a research project which aims to advance our understanding on how exposure to elevated or prolonged heat during pregnancy impacts pregnancy outcomes in Wales and London. The project is led by University of Swansea. MAGENTA is a research project which aims to advance our understanding on how exposure to elevated or prolonged heat during pregnancy impacts pregnancy outcomes in Wales and London. The project is led by University of Swansea.

You can read more here: https://magentaresearch.org/

The NIHR Great Ormond Street Hospital (GOSH) Biomedical Research Centre is a collaboration between GOSH and the UCL Great Ormond Street Institute of Child Health, whose remit is to drive pioneering research into over 200 rare childhood diseases. The Applied Child Health Informatics Theme (ACHI) aims to enhance the evidence and improve outcomes for children with rare and complex conditions through the application of data science to maximise the research potential of electronic healthcare data. By leveraging the wealth of information found in population-wide datasets, our research is able to generate valuable insights into the determinants, disease burden and management of a range of conditions such as congenital anomalies, inherited and genetic disorders, as well as the health and developmental needs of affected children starting from birth through to adulthood.

As part of the NIHR infrastructure, we collaborate with a national network of clinicians, epidemiologists, health economists and health data scientists to facilitate and support data-driven research projects. Our activities include developing data resources through negotiating multi-sector data linkages, managing agreements and access for external data extracts, creating a knowledge base and sharing resources for the use of administrative data, providing training (e.g. short courses, taught degree modules and research degrees supervision), conducting public engagement/consultation on the use of routinely-collected patient data for research, among others.

Professor Pia Hardelid (deputy theme lead), Dr Ania Zylbersztejn and Dr Joachim Tan (junior faculty representatives) from the Child Health Informatics Group are members of ACHI.

https://www.gosh.nhs.uk/our-research/our-research-infrastructure/nihr-great-ormond-street-hospital-brc/about-our-biomedical-research-centre/our-research-themes/applied-child-health-informatics/

The Pocket Gardens project is running in 2024/25 and will address the challenges posed by extreme temperatures in urban schools and is being run in 5 phases:

1. Assess Availability of Green Space: Comprehensive assessment conducted of the current availability of green spaces in urban early years providers and schools across Greater London.
2. Evaluate Areas of Intervention: Identification of early years providers and schools that are most at risk of exposure to extreme temperatures.
3. Design and Implementation: Develop and implement a pocket garden, as a proof of concept, in a selected school or early years providers.
4. Resilience Building: Enhance the resilience of school environments to extreme temperatures through strategic green space interventions.
5. Building Partnerships for Future Collaborations: Foster collaborations between Local Authorities, councils, schools, and UCL to create a network of support for future projects.

Funded by UCL Grand Challenges, and it is a collaboration with The Bartlett Faculty of the Built Environment.

There is a strong relationship between health and education services and a need for more evidence that can support policy makers on how health and education services completent each other.

Using administrative data collected by health and education services the study will address the following aims:

• To evaluate lnikage success between the National Pupil Database, Personal Demographic Service, Hospital Episode Statistics and mortality data.
• To evaluate the association between hospital admissions for children and adolescents with underlying chronic conditions and subsequent school achievement.
• To evaluate the association between educational outcomes and subsequent use of hospital services taking into account underlying chronic conditions.

Contact: Ruth Gilbert

Administrative data hold great potential for informing public policy. However, this potential is not yet being realised due to restrictions around access and linkage, and the need to preserve data confidentiality. Governance procedures and approvals lead to long timescales and tight restrictions on data access, which can jeopardise publicly funded research.

One solution is to generate synthetic data that preserve the statistical properties of the original sources, but that do not correspond to any real individuals and do not pose any privacy risks. These data could be widely shared, allowing researchers to understand the structure of the data sources, develop analysis plans and algorithms, and test out different models. This could be done in parallel to applying for access to linked administrative datasets, streamlining the research process. Final refinements and analyses would be conducted on the real data.

Our study will test the feasibility of using a range of approaches for creating synthetic linked administrative datasets. We will compare two existing methods: ‘Synthpop’, used to create synthetic versions of the Scottish Longitudinal Study, and ‘Simulcrum’, used to create synthetic versions of the National Cancer Registry, with a new approach ‘Synth-Imp’, based on recent methodological developments for the imputation of missing data. We will evaluate these approaches using the exemplar of linking the National Survey of Sexual Attitudes and Lifestyles 3 (Natsal 3) to two administrative datasets: Hospital Episode Statistics (HES) and the National Pupil Database (NPD). Linkage between Natsal 3, HES and NPD will provide a unique opportunity to gain a deeper understanding of the social, behavioural and biological aspects of sexual health, and to generate evidence to inform implementation and monitoring of sexual health interventions. Based on our findings, we will generate guidelines on the appropriate use of synthetic data.

Katie Harron
Bianca de Stavola
Pam Sonnenberg
Andrew Copas
James Carpenter

Contact: Katie Harron

The health visiting service is a universal offering to all parents, fundamental for improving child health. Since 2015, there have been substantial changes to the service. Firstly, it’s commissioning was transferred from the NHS to local governments. Secondly, as part of the overall public health budget cuts under the government’s austerity programme, there has been an estimated 20% reduction in funding. And thirdly, this has been accompanied by a 35% decline in the number of health visitors across the country. A government review of the health visiting service and Healthy Child Programme is currently underway, aiming to modernise the programme to reduce inequalities in children’s school readiness. A number of stakeholders and organisations have called on the government to commit to a programme that is offered universally. However, it is unclear, due to the changes over the past five years to the health visiting service, whether this is still being delivered in practice.

The aim of this research is to explore the variation in the health visiting service across England. We plan to better understand how the service is being delivered in different areas of the country, and whether recommended standards are being met. We will also explore the factors which may help explain differences and the perspectives of those involved in the service. To do this we will use a mixed methods approach. We will firstly analyse administrative data from local authorities and NHS Digital’s Community Services Data Set to explore the delivery of the health visiting service. This will be triangulated with findings from case studies and interviews with parents, health visitors and managers in local authorities to put our findings in context.

Contact: amanda.clery.14@ucl.ac.uk

All children in the UK are offered screening for several rare conditions at five days of age. One of these conditions is congenital hypothyroidism. Without early detection and treatment, congenital hypothyroidism can result in severe learning disability. Since the start of newborn screening for congenital hypothyroidism 40 years ago, there has been an increase in the proportion of babies born with this condition, particularly a type called congenital hypothyroidism with gland in situ (CH-GIS). The thyroid gland in children with CH-GIS does not produce sufficient hormones for healthy growth and development. We do not know why CH-GIS is becoming more common, or how it affects health, development and learning as children grow up. We want to know why more babies are being diagnosed with CH-GIS, and what health and development is like for children living with this condition. 

This study will include data from babies born in the North Thames region (including North London, Bedfordshire, Hertfordshire, and Essex) and whose newborn screening blood spot samples were tested at the Great Ormond Street Hospital (GOSH) newborn screening laboratory between January 2000 and December 2020. 
The following data sources will be used to create the study dataset:  

• North Thames Newborn Screening Database. This database contains demographic data and lab results.
• GOSH Congenital Hypothyroidism Database. This dataset contains information on 1800 children who have screened positive for congenital hypothyroidism through the North Thames newborn screening programme since 2006. The database also contains genetic data for ~50 children with congenital hypothyroidism.
• Births and Death registration data from the Office of National Statistics.

In addition, the GOSH Congenital Hypothyroidism Database will be linked to:

• Hospital Episode Statistics (HES). HES contains data on all admissions to NHS hospitals, Accident and Emergency (A&E) attendances and outpatient bookings. We will use data from HES from both children and mothers in this study, as mothers’ health may impact on children’s health and education outcomes. 
• National Child Measurement Programme (NCMP). NCMP contains height and weight measurements for all children entering and leaving primary school.
• Department for Education (DfE) National Pupil Database (NPD). This database holds data on demographics, phonics and key stage results, and special educational needs provision for all children in state primary and secondary schools; 93% of all school children in England. 
• NHS Business Service Authority (NHSBSA) Community Dispensing data. The NHS collects data relating to NHS prescriptions dispensed in community pharmacies (that is, pharmacies that are not in hospitals).

You can find more information about this research study on our website (https://www.ucl.ac.uk/child-health/research/population-policy-and-practice/child-health-informatics-group/) where you will also find a Privacy Notice with more information on how we comply with general data protection regulations (GDPR): https://www.ucl.ac.uk/child-health/research/population-policy-and-practice-research-and-teaching-department/cenb-clinical-4.

If you would like to know more about the project, please contact the principal investigator, Dr Pia Hardelid via email, or by phone or post, via the UCL Great Ormond Street Institute of Child Health:
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London 
WC1N 1EH

Telephone: 020 7242 9789/020 7905 2000
Email: p.hardelid@ucl.ac.uk

The ECHILD project is a research study run by University College London that joins together existing health, education and social care information for all children in England for the first time to create a deidentified database.  We are using this linked data to better understand how education affects children’s health, and how health affects children’s education.  The ECHILD project focuses on understanding health and educational outcomes for groups of children and young people with additional needs (sometimes called “vulnerable groups”). This includes children with chronic health issues, receiving special educational needs support, or who are in care.  To start, ECHILD will use the data to understand how the COVID-19 pandemic and lockdown affected groups of children who need extra support. We will also look at the quality of the linked data to find out its strengths and limitations for research.

Our results will help government, and the providers of services for these children to better understand their needs and to see who might be falling through the gaps.  We expect that our results will help health services and policymakers to better understand how best to meet the needs of vulnerable children during a time of crisis, such as the COVID-19 pandemic.

The ECHILD Database links electronic records that are already collected by the Department for Education and NHS Digital from the National Pupil Database (NPD) and Hospital Episodes Statistics (HES).  Our study uses the linked, de-identified data that is collected from hospitals and schools in England. This study uses data only for children born on or after 01/09/1995. The research team will not have access to personal information that could identify a child.  All personal identifiers (such as name and postcode) will have been removed before transfer of any data to the researchers. The researchers cannot identify individuals under any circumstances.

The linked health and education data will only be accessible in the Office for National Statistics Secure Research Service. Information about the ‘Five Safes’ security framework of this service can be found here. 

For more information about the data used in this project, please see the privacy notice here.

You can find more information about this research study on our website: https://www.ucl.ac.uk/child-health/echild

You will also find a Privacy Notice with more information on how we comply with general data protection regulations (GDPR): https://www.ucl.ac.uk/child-health/research/population-policy-and-practice-research-and-teaching-department/cenb-clinical-4.

The ECHILD study is led by University College London in collaboration with the London School of Hygiene & Tropical Medicine and the Institute for Fiscal Studies, and in partnership with NHS Digital and the Department for Education.  For more information about the ECHILD study team, please visit our website team page: here.

If you would like to know more about the project, please contact the principal investigator, Prof. Ruth Gilbert via email, or by phone or post, via the UCL Great Ormond Street Institute of Child Health:

Prof Ruth Gilbert
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH

Email: r.gilbert@ucl.ac.uk
Telephone: 020 7905 2101

RTIs, including bronchiolitis, pneumonia and croup, are the most common reason for hospital admission in young children in the UK. These admissions are stressful for children, their parents and costly for the National Health Service (NHS). Being admitted to hospital with an RTI during the first few years of life is also associated with the development of chronic respiratory problems, such as asthma, in later childhood. Previous research has found that children from poor backgrounds are more likely to need an RTI admission, but it is not clear which aspects of children's living conditions make the largest contribution to RTI hospital admissions. In this study, we will examine whether exposure to air pollution in the womb or during early childhood, and poor housing conditions are associated with a child's risk of being admitted to hospital with an RTI. Also, we will look at how many RTI admissions, could be prevented in the UK if we reduced air pollution and/or improved housing conditions for families with young children.

We will use data collected from birth certificates, linked to maternity records and hospital admission data for all children born in England between 2005 and 2014, and Scotland between 1997 and 2019: 8 million children in total. We will link in data about children's air pollution exposure during pregnancy and childhood, building characteristics, and information about housing and socio-economic background from the 2011 Census. All data will be kept on secure servers and linked using methods that protect the identities of mothers and children. We will use these data to examine whether exposure to air pollution and poor housing conditions are associated with an increased risk of being admitted to hospital with an RTI during the first five years of life. We will use statistical methods that allow us to take into account whether children have other underlying risk factors for RTI hospital admissions, such as chronic health problems. We will also make sure that other researchers can access these datasets to carry out maternal and child health research in the future.  Further information on data used in the PICNIC Study can also be found within the study’s privacy notices: here.

You can find more information about this research study on our website: https://www.ucl.ac.uk/child-health/picnic-study
You will also find a Privacy Notice with more information on how we comply with general data protection regulations (GDPR): here.
 

The PICNIC study is led by researchers at University College London, in collaboration with the University of Edinburgh, the University of Tampere, London School of Hygiene and Tropical Medicine and City University of London.

For more information about the PICNIC study team, please visit our website team page: here.  Alternatively, If you would like to know more about the project, please contact the principal investigator, Dr Pia Hardelid via email, or by phone or post, via the UCL Great Ormond Street Institute of Child Health:

UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London 
WC1N 1EH

Telephone: 020 7242 9789/020 7905 2000
Email: p.hardelid@ucl.ac.uk

Children who have Down syndrome can lead long and fulfilling lives. Health, education, and social care services have a duty to support children and their families to achieve this, but inequalities exist in the availability and accessibility of these services across England. Although we know that all these services are important for the child’s wellbeing, we lack evidence on how services complement or compensate for each other and how their provision affects long-term health or education outcomes. 

This project aims to:

1. Identify inequalities in access to these services for children with Down syndrome across NHS trusts, specialist services and demographic and clinical groups. 
2. Examine how inequalities in access to these services can affect the long-term health and education outcomes of children with Down syndrome.

We will use de-identified hospital admission and education data collected from hospital and schools in England to follow cohorts of children with Down syndrome from birth to adulthood. All personal identifiers (such as names and post-codes) are removed before data are transferred to researchers. Our Privacy Notice contains more information on how we comply with general data protection regulations (GDPR) and can be found here. 

If you would like to know more about the project please contact the principal investigator, Professor Ruth Gilbert, via email.
 

VERDI is a project that prioritizes women and children in the research on new coronavirus variants of concern.  Through a multidisciplinary global network, we want to improve the understanding of the epidemiology, transmission, disease progression and treatment of variants of SARS-CoV-2 among children and pregnant women, to inform public health strategies.

There are several currently designated “variants of concern” identified since the start of the SARS-CoV-2 pandemic in 2019. New variants will almost certainly continue to emerge, even as effective vaccines increase population immunity.  The potential impact of new variants of the SARS-CoV-2 virus in pregnant women and children, including their role in transmission, and their disease severity and treatment, is not well understood, and there is a knowledge gap across these populations.

The VERDI consortium will generate improved evidence on the epidemiology, outcomes, prevention and treatment of variants of SARS-CoV-2 amongst children and pregnant women as a global response to the pandemic, involving cohorts studies from diverse geographic and economic settings.  The evidence and insight arising from the multidisciplinary research will help to rapidly deliver recommendations on the best strategies to control viral spread and optimize clinical management and treatment of COVID-19 in children and pregnant women.

The evidence and insight arising from the multidisciplinary research will help to rapidly deliver recommendations on the best strategies to control viral spread and optimize clinical management and treatment of COVID-19 in children and pregnant women.

https://verdiproject.org/

Email: p.hardelid@ucl.ac.uk

Health visiting is a universal service that works with other local services such as GPs and social care to improve the health and wellbeing of children and families. Health visitors are qualified nurses who provide health screening, health and development reviews and parenting advice and support to families with children aged 0-5 years. 

Currently little is known about the number or type of health visiting contacts that different families receive, or the difference that health visiting makes to child outcomes. Policymakers in central and local government would like to increase the impact and efficiency of the health visiting service. To do this, they need more information about the benefits of health visiting, compared to the costs, for different types of family in different places. 

This mixed-methods study will use health visiting data linked to data from social care, hospitals and schools to investigate whether children’s health and development outcomes vary depending on how much health visiting support they have received. We will also look at whether the average health of children is different in areas that deliver health visiting in different ways. Using economic methods, we will estimate the monetary value of the outcomes of health visiting and compare this to the costs of providing the service. We will interview parents and professionals in selected local areas to understand why the delivery and impact of health visiting varies across the country, and which aspects are working well and less well. 

Our quantitative and qualitative findings will be brought together and shared with national policymakers, commissioners and managers of health visiting services, health visitors and parents.

This project is led by researchers at University College London in collaboration with the University of Kent. To find out more, read the full project protocol or contact Katie Harron: k.harron@ucl.ac.uk 

We want to understand the impact of a diagnosis of childhood cancer on school attainment and attendance. We also want to find out whether childhood cancer survivors are more likely than other children to have further health conditions when they get older.

Due to improvements in diagnosis and treatment over recent decades, children who have cancer are more likely to survive. There are a growing number of children and adults who survived cancer in childhood. However, the experience of cancer and its treatment or complications, can mean that survivors of childhood cancer face barriers to learning and do not fulfil their potential in school. We need to know more about their quality of life during childhood and young adulthood, including their school experiences, in order to further improve their treatment and minimise disruption to education. We plan to use linked national administrative data from schools and hospitals for all children, together with cancer data to understand how a cancer diagnosis, its treatment and complications, affect participation in education and attainment at school.

Information about school test results, absences and other information such as Special Educational Needs are routinely collected by schools but are kept separately from high quality information on cancer diagnosis and treatment. In this study, we will use existing data from hospitals and schools using a database called ECHILD.

We will bring this together with high quality information on cancer diagnosis and treatment. This process is called data linkage. The linkage will allow us to gain a better understanding of the changes in hospital contacts and school absences, attainment and Special Educational Needs provision, before, during and after cancer diagnosis, into adulthood. We will look at a range of childhood cancers, including leukaemia and brain cancer.

By adding to the evidence on outcomes for childhood cancer survivors, this will enable us to make decisions about how best to support children with cancer. For example, this could mean increased support in school. Evidence about longer-term outcomes will also inform decisions about different treatment options. We will also enhance the ECHILD database with cancer registration data for childhood cancer so that many more questions can be answered by UK researchers.

Funded by Cancer Research UK

Contact: Katie Harron: k.harron@ucl.ac.uk, Tony Stone: tony.stone@ucl.ac.uk.

We are setting up a new data resource called the Kids’ Environment and Health Cohort to allow researchers to study the link between children’s environments and their health and education.

Children are much more vulnerable to health-damaging features of their environment than adults. Many children in England also lack access to services and infrastructure where they live and go to school.      

Exposure to things such as outdoor air pollution, overcrowding, mould in the home, fast food advertising near schools, or lack of access to greenspace during childhood is associated with the development of long-term conditions such as asthma, poor mental health, and obesity, and worse educational attainment. We need better data to understand how these home and school environments influence the health and education of children.

The Government is introducing measures to improve environments and make housing safer. We also need data to help us understand whether these environmental policies are improving children’s wellbeing and school results. 

We will establish the Kids’ Environment and Health Cohort, a national database containing data from schools, hospitals, and community pharmacies to create health and education histories for all children born in England from 2006 onwards, around 11 million children.      

Data for children will be linked to information about their mothers’ health during pregnancy, and to data on local environments in and around children’s homes and schools.

Ultimately, research based on the Kids’ Environment and Health Cohort data will inform government departments and local councils, as well as the public at large, about how well their housing, environmental and planning policies are working to improve children’s lives.

Please click here for more information about the potential of the data held in the Kids’ Environment and Health Cohort

The cohort will link the following datasets:

• Office for National Statistics birth and death registration data
• Census 2011 and 2021 data: data on children born within two years of each Census
• Hospital Episode Statistics: data on hospital contacts
• Maternity Services Data: data on maternal health during pregnancy
• Mental Health Dataset: data on referrals to mental health services
• Community Dispensing Data: data on dispensed medicines, including for asthma
• National Pupil Database: data on all children in state school, including special educational needs provision and exam results
• Personal Demographic Service (NHS address records) and Getting Information About Schools Data (school addresses): used by the Office for National Statistics to link data on the local environment to children’s data.

Several environmental datasets about small areas across England on air pollution, energy efficiency of buildings, and proximity to major roads will also be linked to the de-identified health and education data.

All data linkage must be approved by the Confidentiality Advisory Group, the Office for National Statistics, NHS Digital, and the Department for Education.

The Kids’ Environment and Health Cohort cannot be used to identify individuals. However, it can tell us about groups or characteristics of children who might benefit from modification or adaptations to their physical or social environments.

All data will be kept on secure servers at the Office for National Statistics. The different datasets making up the cohort will be linked using methods that protect the identities of mothers and children by NHS England and the Office for National Statistics. No identifiable (names, addresses, school addresses) will be accessible to researchers. 

Researchers who want to access the data will need to undertake training in handling sensitive data.  

Please click here for further information about the data held in the Kids’ Environment and Health Cohort.

Please click here for the privacy notice and information about your options.

For more information about the Kids’ Environment and Health cohort please visit: https://kenvh-cohort.org.uk/

Contact: kenvh-cohort@ucl.ac.uk
UCL Great Ormond Street
Institute of Child Health,
30 Guilford Street,
London, WC1N 1EH

Funder: ADR UK

We are working in partnership Imperial College London, University of Bristol, The University of Edinburgh, Swansea University, Health Data Research UK and partners to establish national infrastructure and methods to link localised social and environmental health-related data to existing, longitudinal administrative records from healthcare services, surveys, and recruited cohorts.

Our current and future health is strongly influenced by our social and physical environments. Changes in family structure, work patterns, income, housing, and environmental exposures are linked to persisting health inequalities. Understanding how these factors affect people’s health creates an opportunity for evidence-based interventions.

The Social and Environmental Determinants of Health Research Driver Programme will enhance the UK’s capabilities to tackle health inequalities by generating powerful, linked data resources to guide policy, public health and services. It will deliver UK-wide interoperable and harmonised, FAIR health data assets comprising administrative and recruited cohorts linked to high resolution, social and environmental data at the level of home and household.

We will:

• Develop governance and technical approaches for linking social and environmental data to people and their households across the UK while protecting privacy
• Work with the public and data custodians to develop principles for maintaining geoprivacy
• Establish reusable national, administrative databases and recruited cohort studies enhanced with UPRN-linked time-specific social and environmental data.
• Generate new research insights into the ways that place-based social and environment factors affect people’s health to inform policies to improve homes, where people live and work, and health within households across the life course.

This work is funded by UK Research and Innovation (UKRI) as part of an ambitious set of programmes addressing Securing better health, ageing and wellbeing, one of five UKRI Strategic Themes.

https://www.hdruk.ac.uk/research/research-driver-programmes/social-and-environmental-determinants-of-health/

This study aims to generate evidence on the health needs of mother involved in care proceedings in England (care proceedings are family court cases where a local authority applies to place a child into state care). Maternal mental health problems and substance misuse are key risk factors for child neglect or abuse and are common in court-mandated placement into care in England. However, there is limited evidence about prevalence of and response to parental health needs before, during and after care proceedings to inform policy and practice.
Our project will use de-identified record-level longitudinal data on hospital attendances, mortality and family courts, linking records for approximately 12 million women with history of a live birth (i.e., mothers) in an English hospital between 1997-2019. These linked data will be used in the following ways:

1) To assess the accuracy of linkage between family court and hospital records in England. 
2) To describe the healthcare needs of women with a child in care proceedings, and to compare them to other women who are parents. This will include, for example, exploring whether women involved in care proceedings are at greater risk of premature mortality.
3) To identify health-related indicators (such as diagnoses and types of hospital contact) that are associated with being the subject of care proceedings. We will also explore risk and protective factors for returning to court with new children among women involved in an initial set of care proceedings. 

Statistical methods will be used to understand patterns in the data and possible associations between hearing dates, legal outcomes and use of hospital services.

Findings generated from this study will be used by practitioners, services, commissioners and policy-makers to inform improved responses to women’s health needs in the context of child protection.

Family courts do not routinely collect information on healthcare need or use of individuals involved in care proceedings. Therefore, linkage of health and family court data is necessary to identify health need among women involved in care proceedings. This study will use linked, de-identified administrative data on NHS hospital attendances (Hospital Episodes Statistics) between 1997-2020, ONS mortality statistics on deaths between 2007-2020, and family court data on care proceedings (Cafcass) between 2007-2019 in England. 

This study is funded by the Nuffield Foundation (please find the study website here). You will also find a Privacy Notice with more information on how we comply with general data protection regulations (GDPR): https://www.ucl.ac.uk/child-health/research/population-policy-and-practice-research-and-teaching-department/cenb-clinical-4.

Professor Ruth Gilbert (r.gilbert@ucl.ac.uk)
Dr Linda Wijlaars (l.wijlaars@ucl.ac.uk)
Dr Georgina Ireland (g.ireland@ucl.ac.uk)
Dr Matthew Jay (matthew.jay@ucl.ac.uk)

In this project, we will use administrative datasets to describe and understand variation in child health and healthcare use across England. There are two major pieces of research in progress, which aim to describe and understand:

1. Local authority variation in babies’ accident and emergency (A&E) attendances and emergency hospital admission rates; and
2. The association between maternal migration history and hospital admissions for common conditions in childhood. The overall aim of this work is to demonstrate the value of national administrative birth cohorts  for informing public health policy at local and national level.

This project is part of a wider harnessing data to improve child health programme within the NIHR School for Public Health Research (NIHR SPHR).

A key challenge for public health is that children growing up in poor families are much more likely to suffer ill-health than children living in wealthy families. Although there is a lot of evidence about how unequal socioeconomic position on child health in England, the impact of other factors such as parental migration status or ethnic minority group on children’s health outcomes are less well understood. Added to this, is a wider lack of information of drivers of increasing infant A&E attendances and emergency hospital admissions across local authorities in England.

In this project, we will use a cohort of all babies born in NHS hospitals between January 2003 until December 2017, developed using Hospital Episode Statistics Admitted Patient Care (HES APC) by our team at UCL. We also use ONS birth registration data, NHS birth notification data linked to HES APC and ONS mortality records for babies born in England in a 10 year period (and their mothers). The dataset, running from 2005 to 2014, has been developed by researchers at City, University of London. We also intend to use 2011 Census data linked to births in the City, University of London cohort over a two year period.  Further patient notifications information can be found in the 'Children and Family Policy Research Unit (CPRU)' and 'Housing, family and environmental risk factors for hospital admissions in children' privacy notices here.

The studies described here are led by researchers at University College London. The wider NIHR SPHR programme of work also includes researchers from LiLaC (the Liverpool and Lancaster Universities Collaboration for Public Health Research) and Imperial College London.

You can find more information about the Harnessing data to improve child health programme on the NIHR SPHR website: sphr.nihr.ac.uk/research/children-young-people-families/harnessing-data-to-improve-child-health-wp2/. 

For further information about the projects described here, contact the PI: Pia Hardelid.

Previous evidence of rare but serious adverse outcomes of macrolide use has been observed in both adults and in children. These adverse outcomes might be associated with the arrhythmic effect of macrolides and policy advice about their use in pregnancy varies. Policy regarding macrolides use in pregnancy also varies across countries. 

This project aims to investigate the adverse effect of macrolides, especially associations between macrolides use during pregnancy and adverse child outcomes, using administrative data. Meanwhile, the project also aims to explore the potential mechanism underlying the observed adverse child outcomes, including fetal death, congenital malformations, and neurodevelopment disorders.

The results were published as an open access article in the British Medical Journal. 

You can download the web appendix by clicking here.

Contact: heng.fan.16@ucl.ac.uk

Infant formula is consumed globally by over 60% of infants aged less than six months. Unlike other early interventions to support cognitive development, modifications to infant formula are highly scalable. They are reviewed and regulated centrally, resulting in the potential to affect a large group of infants worldwide. Previous research mainly focused on immediate cognitive impacts of formula modifications. But this isn’t necessarily the main concern for parents and policy makers as early measures are often unreliable. To more fully address their cognitive impact, we need to follow children to older ages to see whether there are long-term cognitive effects. This adds to the difficulty of running randomised trials since longer-term follow-up is both difficult and expensive. The few trials that attempted long-term follow-up had low response rates which makes their results hard to interpret. In addition, as modifications had begun to establish themselves in clinical practice, it was challenging to conduct new trials with control formulas that did not include the modifications. 

Our work addresses these gaps by linking dormant (i.e., historical) infant formula trials to administrative education data to compare differences in academic performance between children previously randomised to either nutritionally modified or standard infant formulas. We used section 251 (NHS Act 2006), instead of participant consent, as a legal basis for the linkage, because the potential for public benefit from the findings justified temporarily lifting the common law duty of confidentiality. This method substantially increased the number of participants for which we had outcome data available: 86% compared with an average of 48% in previous comparable studies. All data we analysed was pseudonymised and protected by strict data sharing agreements so that only trained researchers could access the data, and no one could relate information to named individuals.

Between 1982 and 2001 the Nutrition Unit, presently based at the UCL Great Ormond Street Institute of Child Health (GOS ICH), London, conducted several landmark trials of early infant nutrition under the lead of Professor Alan Lucas. Our follow-up study focused on 7 trials, which among them randomised about 1,500 infants, including infants born preterm, small-for-gestational-age and healthy term infants. Whilst the Nutrition Unit coordinated the trials from London and prior to 1996 from The Dunn Nutrition Unit in Cambridge, the participants themselves were born in cities outside the London area, including Leicester, Nottingham, Cambridge, Sheffield, Norwich and Kings Lynn. The trials compared infants fed modified and standard diets. The type of dietary enrichment differed according to the trial. The type of dietary enrichments were enriched formula feeds, iron supplementation, modified fat blends added to formula milk (LCPUFA, palmitate) and nucleotides. 

We found no evidence of cognitive benefit and weak evidence of worse academic performance, associated with some formula modifications (LCPUFA). We could demonstrate that the use of linkage of dormant trials to administrative data on the basis of section 251 makes it eminently feasible to provide new, timely and important answers from dormant RCT data that is already available, minimising costs, waiting times, and attrition bias. Our results are currently being peer-reviewed and should be available as a publication soon. The study protocol can be found here: https://bmjopen.bmj.com/content/10/7/e035968 The study also resulted in a doctoral dissertation available here: https://discovery.ucl.ac.uk/id/eprint/10128325/

This work was supported by the Economic and Social Research Council UCL, Bloomsbury and East London Doctoral Training Partnership (ES/P000592/1) and the Great Ormond Street Hospital Charity Research Starter Grant (V0017). The funders of the study had no role in design, data collection, analysis, or interpretation, or writing of the report.

If you have any questions about this study, please contact: 
Dr Maximiliane Verfuerden (m.verfuerden@ucl.ac.uk) or 
Prof Ruth Gilbert (r.gilbert@ucl.ac.uk).
 

Bronchiolitis caused by respiratory syncytial virus (RSV) leads to over 30,000 hospital admissions annually in infants in England. RSV infection only confers transient immunity, and early RSV infection is associated with asthma in later childhood. Several vaccine candidates are currently in clinical trials. We currently know very little about how age at first infection is affected by, for example, the number and age of siblings, or what factors influence protection from maternal antibody. We are carrying out the first community serosurvey of RSV in the UK using a unique collection of serial baby blood samples linked to maternal, family and symptom data from the Born in Bradford study. We will develop novel statistical methods to estimate the age at first and subsequent RSV infection in the first two years of life, and validate our findings against parent questionnaires and routinely collected primary care data. This study will provide important information about who to vaccinate, and when, to ensure babies are protected from early RSV infection, novel methods to estimate age at infection from sparse serological data, and validated methods for a larger, pan-European study of the role of RSV infection in early life and respiratory health in later childhood. The project is funded by the Wellcome Trust, and is a collaboration between UCL, LSHTM, Born in Bradford, RIVM, LSHTM and Kemri-Wellcome.  

Bronchiolitis due to respiratory syncytial virus (RSV) is the third most common reason for hospital admission in infants in England. RSV circulation is highly seasonal, and bronchiolitis admissions peak in the beginning of December every year. Although there is no vaccine against RSV, premature infants with some chronic heart or lung conditions, or children aged less than two years old with severe immune deficiency are recommended by the Joint Committee of Vaccination and Immunisation (JCVI) to receive palivizumab, a humanised monocloncal antibody. Palivizumab has been shown in clinical trials to reduce hospital admissions related to RSV in high risk children. However, palivizumab is expensive, and unlikely to be cost-effective apart from in children with very severe underlying chronic illness. There is no nationally representative data from the UK on what proportion of eligible children are given palivizumab. Further, there are no studies assessing the effect of palivizumab on hospital admissions for bronchiolitis in a UK setting, and no independent national studies of long-term outcomes for children given palivizumab.

In this study, we are using the Hospital Treatment Insights Database, containing linked electronic prescribing and hospital administrative data from 43 hospitals in England, to determine the proportion of eligible children who are prescribed palivizumab in secondary care. Further, we will examine whether palivizumab reduces bronchiolitis admissions during RSV season in high risk children, and the effect of palivizumab treatment on respiratory health outcomes until age five in high risk children. We are working with IQVIA, the HTI data suppliers, to analyse and interpret the data.

Contact: Pia Hardelid 

Funder: Wellcome Trust

PREVAIL is a Phase 3 Randomised Unblinded Trial, aiming to recruit 858 babies over 2 years, from 18 Neonatal Units across England. The trial will determine the effectiveness and cost-effectiveness of antimicrobial impregnated Premicath catheters (Premistars) compared with standard Premicath for reducing Blood Stream Infection (BSI) in neonates.

Funder: NIHR Health Technology Assessment

Every child has a fundamental human right to education, enshrined in a range of international human rights instruments. In England, all school-aged children must receive full-time and effective education which, for most children, occurs through state-funded schools. Some children, however, miss out on their education through off-rolling and formal exclusion. Off-rolling occurs where a school removes a child from their roll for some illegitimate purpose, such as to game league tables. Children can be formally excluded, either temporarily or permanently, as a disciplinary measure. It is known that children otherwise vulnerable to poor outcomes, such as children looked after, children in need and children who get special educational needs services, are more likely to miss out but evidence as to the extent to which this occurs is limited.

We therefore aimed to use whole-of-England data to quantify the extent to which children leave school early and are excluded across the entirety of secondary school and how this varies geographically. In particular, we aimed to quantify the extent to which children in need, children on child protection plans, children looked after and/or children who get special educational needs services (including children who previously held these statuses) are more at risk of these adverse outcomes and exclusion.

We used the National Pupil Database linked to data from children’s social care on children in need and children looked after.

We have published our findings from this study across several open-access publications:

• Jay MA, Mc Grath-Lone L, De Stavola B, Gilbert R. Risk of school exclusion among adolescents receiving social care or special educational needs services: a whole-population administrative data cohort study. Child Abuse & Neglect 2023 (in press).
• Jay MA, Mc Grath-Lone L, De Stavola B, Gilbert R. Evaluation of pushing out of children from all English state schools: administrative data cohort study of children receiving social care and their peers. Child Abuse & Neglect 2022;127:105582.
• Jay MA. An epidemiological study of participation in secondary schooling by children receiving social care in England [PhD Thesis].
• Jay MA, Gilbert R. Special educational needs, social care and health. Arch Dis Child doi:10.1136/archdischild-2019-317985.
• Jay MA and Mc Grath-Lone L. Educational outcomes of children in contact with social care in England: a systematic review. BMC Systematic Reviews 2019;8:155.
• Jay MA, Mc Grath-Lone L and Gilbert R. Data Resource Profile: National Pupil Database (NPD). Int J Pop Data Sci 2019;4:1:08.
• Emmott EH, Jay MA and Woodman J. Cohort Profile: Children in Need Census (CIN) records of children referred for social care support in England. BMJ Open 2019;9:e023771.

You will also find a Privacy Notice with more information on how we comply with general data protection regulations (GDPR): https://www.ucl.ac.uk/child-health/chig-privacy-notices.

You can contact Matthew Jay, lead researcher, at matthew.jay@ucl.ac.uk. The project was supervised by Prof Ruth Gilbert.

More than 20,000 babies are born to teenage mothers in England each year, but younger mothers often face challenges that put them at a disadvantage compared with older mothers. Additional support for pregnant teenagers may improve outcomes for mothers and their children, but we do not yet know how best to implement services that are available. We aim to describe how an early support programme called the Family Nurse Partnership (FNP) is delivered across England, and to determine the contexts in which the programme is most effective. 

We will use electronic records that are routinely collected as part of health, education, and social care services, to compare outcomes for FNP participants with similar families who did not participate. We will look at a range of health, education and social care outcomes for children and their mothers. Researchers will only access anonymised data and will not be able to identify any individuals from the data. 

Finding out whether FNP works better for some families (e.g. the youngest teenagers) than others will help improve targeting of resources and highlight groups in need of alternative support. Findings from the study will help policy-makers decide whether FNP should be offered to families in their local setting. Evidence generated by this study will support commissioners in providing improved services for mothers and children who could benefit most, and lead to increased efficiency through more effective targeting of resources.

If you gave birth in an NHS Hospital in England between 2010 and 2017 and were <25 years of age or were enrolled in FNP, your data may be used for this study. You won’t need to do anything extra, and we will not be asking you to complete any questionnaires or to take part in any interviews.

NHS Digital and the Department for Education will use a limited set of identifiers (e.g. NHS number, name, date of birth and postcode), so that professionals can retrieve relevant information about you and your child. These details will then be anonymised, and will always be securely protected. The researchers will never see any of the identifiers. 

NHS Digital and the Department for Education will provide the researchers with information on how FNP participants used health services (e.g. number of hospital visits), educational services (e.g. participation in school) and social care services. This will be in the form of a database containing numbers and codes. An anonymous study number will be used so that the researchers cannot identify any individuals from the data. 

We discussed our research plans with a group of mothers who had enrolled in FNP, and with a separate group of mothers who did not take part in FNP. These mothers were supportive of the study, and some will continue to help inform the research. However, if you would not like your data to be used for this study, or if you would like more information about the study, you can contact the research team (contact details below). If you would like to opt out of your data being used for the study, you will need to provide us with your name, date of birth and postcode. 

Contact: k.harron@ucl.ac.uk

Please see our privacy notices for more information on the study and a more detailed description of our privacy policy.

Every year more than 20,000 children are admitted to Paediatric Intensive Care Units (PICUs) in the UK. Previous small studies suggest that girls may have higher mortality rates than boys in PICU, contrary to what we see in the general population, where childhood mortality is higher among boys than girls. Our previous research based on 86,000 infants supported this and we now aim to examine potential causes of this difference in more detail.

Identifying causes for the differences in mortality rates between girls and boys will help improve targeting of resources and highlight groups in need of alternative support. Findings from the study will help policy-makers decide whether a risk of death scoring based on gender will help improve outcomes for children who are admitted to PICU. Evidence generated by this study will support commissioners in providing improved services for children who could benefit most. It could potentially identify risk factors for mothers that impact on a child’s outcome in PICU.

Using data from the PICANet project, the Hospital Episode Statistics and Office for National Statistics mortality data, we will identify all children admitted to a PICU in the UK between 01 January 2010 and 31 December 2019 to compare the risk of mortality between girls and boys. We will look at a range of health outcomes for children and their mothers to identify any reasons for differences in mortality in PICU.

Hospital, PICANet and mortality data will be de-identified before they are transferred to the research team. This means that personal identifiers will be removed. We will use date of death, as it is important to take deaths into account as an important outcome measure within these analyses. It will not be possible to identify any individual within the data.

The research team will not be able to identify you and cannot remove your records from the study directly at your request.

The PICANet Privacy Notice provides information about the PICANet data collection process and how to remove your/your child’s information from the PICANet database.

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 ‘opting out’. Please visit NHS Digital’s website for further details: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/how-we-look-after-your-health-and-care-information/your-information-choices/opting-out-of-sharing-your-confidential-patient-information

Your choice will not affect the health care you receive.

The privacy notice for this project can be found here.

If you have questions or concerns about the study please contact Ofran Almossawi or the data controller Dr Katie Harron:

Ofran Almossawi, PhD student
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London  WC1N 1EH
Email: o.almossawi@ucl.ac.uk

Dr Katie Harron, Data Controller and PhD Supervisor
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London  WC1N 1EH
Email: k.harron@ucl.ac.uk
Telephone: 020 7905 2101

Hospital Episode Statistics: http://content.digital.nhs.uk/hes

PICANet: https://www.picanet.org.uk/

CHIG members, through the UCL Legal Epidemiology Group, also carry out a range of projects in the field of legal epidemiology.

Find out more about the group.

CPRU is a consortium led from the UCL Great Ormond Street Institute of Child Health (ICH) in partnership with the National Children's Bureau (NCB), the Anna Freud Centre and the Social Care Institute of Excellence (SCIE). Our aim is to provide evidence for policy and practice for the health and well being of children, young people and families.

Visit the Unit’s website: http://www.ucl.ac.uk/children-policy-research

Funder: NIHR