Cohort profile: the eLIXIR Partnership—a maternity–child data linkage for life course research in South London, UK

Abstract

PurposeLinked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health, in mothers and children. The Early Life Cross Linkage in Research (eLIXIR) Partnership was developed in 2018, generating a repository of real-time, pseudonymised, structured data derived from the electronic health record systems of two acute and one Mental Health Care National Health Service (NHS) Provider in South London. We present early descriptive data for the linkage database and the robust data security and governance structures, and describe the intended expansion of the database from its original development. Additionally, we report details of the accompanying eLIXIR Research Tissue Bank of maternal and neonatal blood samples.ParticipantsDescriptive data were generated from the eLIXIR database from 1 October 2018 to 30 June 2019. Over 17 000 electronic patient records were included.Findings to date10 207 women accessed antenatal care from the 2 NHS maternity services, with 8405 deliveries (8772 infants). This diverse, inner-city maternity service population was born in over 170 countries with an ethnic profile of 46.1% white, 19.1% black, 7.0% Asian, 4.1% mixed and 4.1% other. Of the 10 207 women, 11.6% had a clinical record in mental health services with 3.0% being treated during their pregnancy. This first data extract included 947 infants treated in the neonatal intensive care unit, of whom 19.1% were postnatal transfers from external healthcare providers.Future plansElectronic health records provide potentially transformative information for life course research, integrating physical and mental health disorders and outcomes in routine clinical care. The eLIXIR database will grow by ~14 000 new maternity cases annually, in addition to providing child follow-up data. Additional datasets will supplement the current linkage from other local and national resources, including primary care and hospital inpatient data for mothers and their children.

Trends in Severe Acute Respiratory Syndrome Coronavirus 2 (SARS‐CoV‐2) infection and vaccine antibody prevalence in a multi‐ethnic inner‐city antenatal population: A cross‐sectional surveillance study

“…The sample size ( n = 960) provided adequate statistical power, as observed from the narrowness of the confidence intervals, and was comparable to a similar study conducted during the first wave in Oxford, UK ( n = 1000) 21 . Participants recruited to this study were representative of the local population, with ethnic group proportions being similar to the antenatal population at GSTT 14 …”

“…21 Participants recruited to this study were representative of the local population, with ethnic group proportions being similar to the antenatal population at GSTT. 14 There are inherent limitations associated with the use of antibody serology. As a result of the temporaneous waning of SARS-CoV-2 N-protein IgG antibodies following viral infection, it was not possible to determine whether vaccinated individuals with positive S-protein antibody titres only had previously been infected.…”

Changes in the identification and management of mental health and domestic abuse among pregnant women during the COVID-19 lockdown: regression discontinuity study

“…The eLIXIR Partnership is a unique repository of real-time pseudonymised data extracted from the electronic healthcare records of two acute and one mental health National Health Service (NHS) Trust in South London. 14 …”

“…The eLIXIR Partnership is a unique repository of real-time pseudonymised data extracted from the electronic healthcare records of two acute and one mental health National Health Service (NHS) Trust in South London. 14 Maternity and neonatal data for two South London NHS acute trusts are recorded on the BadgerNet electronic patient record system (CleverMed). This system contains data on community and hospital appointments during pregnancy and in the early postnatal period.…”

Maternal and Infant Research Electronic Data Analysis (MIREDA): A protocol for creating a common data model for federated analysis of UK birth cohorts and the life course

“…There are several electronic birth cohorts which use different approaches to compiling routinely collected data for analysing population level data and the health life course. Each has similar data but with additional linkable datasets which lend them different strengths (16)(17)(18)(19)(20). They have arisen, in parallel, with improved relative ease of access, the removal of some research barriers and the need for analyses within specific populations which cannot necessarily be extrapolated from other, dissimilar populations.…”