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The eLIXIR (early LIFe data Cross-Linkage in Research) Cohort.

Lead Research Organisation: King's College London
Department Name: Women's Health

Abstract

The foundations of health are established at the very earliest stages of life. If the developing embryo, fetus, newborn baby and young child are given the best possible start in life, this will provide protection against poor health when they are adults. To achieve these best beginnings, we have to understand what can go wrong at each of those key stages in early life. Some causes are more obvious than others; for example, being born prematurely can lead to breathing problems, but there are many other factors that can interact in a complex way to affect the child's mental and physical health for life. If we know what these factors are, we can work to prevent them or their harmful effects.

The eLIXIR study aims to establish a novel way of unravelling the complexity of harmful early life influences, using routine information from mothers' and babies' health records. Whilst a few people choose to opt-out of providing their records, the vast majority support our strategy. It has the advantage of including almost everyone in our maternity population, so that all ethnic and social groups are represented.

Having shown that we can link together mothers and babies' mental and physical health records from GP practices and hospitals, we are now ready to invite researchers from around the UK to use our data, and explore the early life influences that affect children's health and find ways of preventing disease in adulthood. eLIXIR started in 2018, and we already have data from more than 40,000 pregnant women and their children, and we will continue collecting mums' data until we have data from 100,000 pregnancies; this will take about 4 years. This very large study of mums and babies gives researchers the opportunity to undertake novel approaches to learning from the data, all within an electronic, trusted research space that protects the identify of the mums and babies at all times.

The people providing our data live in South East London, where mental and physical health problems are common. The mothers come from many different ethnic groups and are often socially and economically deprived. Therefore, by working in this community, eLIXIR concentrates on those who most need help, and its findings should be relevant to other disadvantaged communities across the UK. Indeed, we will test this out by working with other groups, in Wales, Scotland and North East England, who are also using routine health data to study mothers and their babies, and the future health of the children.

Another important element of the study is the collection of blood samples. We do not obtain these from all mothers and babies - just those who give permission to do so when they come to clinics in early pregnancy. We already have samples from more than 1400 participants who are similar in their characteristics to our population of mums. This store of blood samples is important, because there are many different kinds of measurements that can be done on them, to add to the information that we have from the GP and hospital health records.

Our plans will be realised by recognition as an MRC 'Longitudinal Population Study'. This would provide us with funding support for the eLIXIR infrastructure, primarily to fund staff who collect mums' and babies' information from different sources, link that information together in the trusted, safe space, or collect the samples. In the future, we plan for eLIXIR to become self-sufficient, as researchers from all over the UK access the information and samples, and contribute to these costs.

Technical Summary

Aim.
Adversity in the earliest stages of life can lead to life-long consequence for the child's health. Through a longitudinal birth cohort achieved by linkage of routine electronic health records (eLIXIR), our aim is to provide UK researchers with a national resource with which to address responsible mechanisms and develop effective interventions. This will be facilitated through establishing the eLIXIR cohort as an MRC Longitudinal Population Study (LPS).

Methodology
We have developed an electronic health record linkage (eLIXIR) with data from pregnant women and their infants from two NHS Acute Trusts, a Mental Health Trust and GP practices in South East London. This antenatal population born in over 170 countries, has a high level of socio-economic deprivation, and 26% of the mothers are of Black ethnicity. In contrast to smaller, conventional birth cohorts, this 'dynamic' cohort accumulates more than 15,000 pregnancies/year. With >98% opt-out consent, the data are representative of our population demographic, and provide a pregnancy and life-course 'read out' of contemporary shifts in population profile, health and health care practice. An important additional layer of information is provided by an 'opt-in consent' bioresource. eLIXIR therefore offers a unique opportunity for researchers to address the abundant inequalities in mental and physical health, and their interaction, in UK women and their children, and the life-long consequences.

Scientific and Medical Opportunities.
Adoption as an MRC LPS will enable access for researchers across the UK engaged in life-course research, particularly those investigating interactions between physical and mental health that drive health inequalities. Also, with a network of collaborators undertaking similar linkages in different geographical settings, we shall agree on common methodologies to enable cross-evaluation of outcomes, whilst planning a joint LPS data-linkage UK facility for research.

Publications

10 25 50

 
Description Absent at Birth Study (Michelle Anderson)
Amount £300,000 (GBP)
Organisation Wellbeing of Women 
Sector Charity/Non Profit
Country United Kingdom
Start  
 
Description Born in Scotland in the 2020s - Pilot study
Amount £879,708 (GBP)
Funding ID MR/V034294/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 09/2021 
End 03/2025
 
Description Economic evaluation of a wireless transmission monitoring system in neonatal intensive care compared to usual care (Ka Keat Lim)
Amount £5,000 (GBP)
Organisation University of Oxford 
Sector Academic/University
Country United Kingdom
Start  
 
Description Exploring maternity care, outcomes, and inequalities in women with intellectual disability and their offspring using linked Electronic Health Records (Rory Sheehan)
Amount £19,664 (GBP)
Organisation King's College London 
Sector Academic/University
Country United Kingdom
Start 03/2025 
End 10/2025
 
Description Gen2020; A comprehensive mapping of the consequences of fetal brain exposure to COVID-19 and maternal inflammation in humans (Grainne McAlonan)
Amount £14,000,000 (GBP)
Organisation Winton Philanthropies 
Sector Charity/Non Profit
Country United Kingdom
Start 08/2023 
End 09/2029
 
Description Health System Shocks & Care Seeking Behaviour: How hasthe COVID-19 pandemic affected care seeking behaviour forpregnant women who belong to ethnic min
Amount £130,000 (GBP)
Funding ID 2745688 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 08/2022 
End 09/2028
 
Description Improving maternal and child health and social inequalities for those with no recourse to public funds and irregular immigration status.
Amount £1,144,678 (GBP)
Funding ID NIHR303183 
Organisation National Institute for Health and Care Research 
Sector Public
Country United Kingdom
Start 11/2023 
End 10/2028
 
Description Maternity Experiences and perinatal oUtcomes of Mothers facing Removal of their Infant due to Social Care proceedings - MUMS@RISC study
Amount £422,672 (GBP)
Funding ID NIHR302565 
Organisation National Institute for Health and Care Research 
Sector Public
Country United Kingdom
Start 09/2022 
End 09/2025
 
Description Prenatal drivers of infant islet autoimmunity (Rachel Tribe & Deena Gibbons)
Amount £2,400,000 (GBP)
Organisation The Leona M. and Harry B. Helmsley Charitable Trust 
Sector Charity/Non Profit
Country United States
Start  
 
Description What current models of pregnancy planning support in mental health services can best facilitate optimal pregnancy outcomes? (Claire Wilson)
Amount £777,552 (GBP)
Organisation National Institute for Health and Care Research 
Sector Public
Country United Kingdom
Start  
 
Description Investigating genetic mechanisms of common and rare complications of pregnancy and associations with the long-term health of the mother and child in diverse populations: the eLIXIR research tissue bank 
Organisation Genomics England
Country United Kingdom 
Sector Public 
PI Contribution Provision of samples for genome analysis
Collaborator Contribution Management of project and funding of staff to consent women for GEL project from those who had contributed samples to elixir bioresource
Impact Nine as yet, still ongoing
Start Year 2024
 
Description Mother & Infant Research Electronic Data Analysis (MIREDA) 
Organisation Swansea University
Country United Kingdom 
Sector Academic/University 
PI Contribution The Mother & Infant Research Electronic Data Analysis (MIREDA), led by the National Centre for Population Health & Wellbeing Research is a partnership which brings together leading researchers from Swansea University, the University of Edinburgh, King's College London, the University of Nottingham, the University of Birmingham, and the Bradford Institute for Health Research. Poverty, disadvantage and associated poor health frequently start at the earliest stages of life with behaviours such as drug and alcohol use affecting a baby's development before and after birth with implications that can last a lifetime. MIREDA aims to improve maternal and infant health, particularly among disadvantaged groups; by developing a new harmonized resource of routinely collected data by joining together the individual birth cohorts in the UK, which will be open to researchers for use in specific projects. The eLIXIR research team has played an active role in the development of the MIREDA partnership. with Professor Lucilla Poston being a Co-Investigator on the MIREDA grant, funded by the MRC. eLIXIR will contribute its own birth cohort data towards the harmonized dataset. Governance and data sharing agreements are currently under review for the above.
Collaborator Contribution Swansea University, as the leading organisation of the Partnership has been developing the core structure of the harmonized dataset, along with governance structures, data access processes etc. The other partners, much like eLIXIR, will be adding their own data to this common data set. This process is underway for the other partners as well.
Impact None yet.
Start Year 2023
 
Description Lambeth Together EDI Group Meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact An overview of the eLIXIR project was provided to the attendees along with main research priorities and ongoing work. The aim of this activity was to establish collaboration with local stakeholders and identify how the project can meet the local community needs. The main outcome was an expressed interest in annual reporting back to individual Trusts and care-providers, such that data and care provision can be improved based on study findings.
Year(s) Of Engagement Activity 2024
 
Description PPIE Group Meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Discussion of use of routine data in health research and identification of research priorities
Year(s) Of Engagement Activity 2024
 
Description PPIE Group Meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Discussion surrounding childhood vaccination uptake, nutrition in pregnancy, and engagement with adolescents in health research
Year(s) Of Engagement Activity 2025