Background to Research
The eLIXIR (early-LIfe data cross-LInkage in Research) multidisciplinary academic partnership intends to establish a unique life course approach to mental and physical health disorders by combining maternal, infant and child research in a single continuum, allowing large numbers of patients to be studied over a long period of time, and establishing an infrastructure for precision medicine. This unique infrastructure linking clinical records, patient samples and informatics will provide a step change in UK research capability for mental and physical health and disease. It will enable research into the early life origins of common disease and mechanistic insight to inform tailored intervention strategies, as well as creating the infrastructure for interventional studies.
A unique advantage of this proposal is that eLIXIR will continuously collect routine clinical data and biological samples from an inner city population with diverse ethnicity and socio-economic status, providing an important resource for research into the early origins of common diseases, for public health and health systems research and intervention trials, as well as international comparisons. No similar UK cohort study exists. Most prospective mother-child cohorts have proven invaluable in the life course of disease arena but being cross sectional in nature, have not provided a continuous health record from a contemporary population. The study will be carried out in a deprived population of London (>600,000 people) served by three UK NHS hospitals (two Acute, and one Mental Health Care). Using methodology developed by partners at the KCL Institute of Psychiatry, Psychology and Neuroscience (IoPPN), https://www.maudsleybrc.nihr.ac.uk/facilities/clinical-record-interactive-search-cris/, a core research platform will be developed to link hospital records from pregnant women, infants and children with data from mental health records, primary care and national databases. Linkage will also be made to data from our partners’ many observational and interventional studies in pregnant women, infants and children to enable long term follow-up of the mental and physical health of the mother and child.
As well as making efficient use of existing resources we can access more representative data from the local population that Kings Health Partners serve, particularly from disadvantaged and vulnerable individuals whose experiences are often the most challenging to obtain information on, as well as those who may be too unwell to participate in clinical studies. These data will provide us with information about what is happening in health services in a real world setting and will enable long term follow-up minimising loss to follow-up and the expense of large population cohort studies.
The development of a bioresource from routine blood samples from all pregnant women and infants attending antenatal care will provide a valuable biological resource to enable future large scale mechanistic studies to investigate the early life origins of disease, and to inform future intervention strategies.
eLIXIR aims to create a unique core infrastructure linking routine clinical records, patient samples and informatics that will provide a steep change in UK research capability in the life course of physical and mental health disorders. This will be achieved by an innovative multidisciplinary partnership comprising expertise in obstetrics, paediatrics, psychiatry, primary care, informatics, implementation science and the social sciences.
There are 4 specific aims:
- To develop an eLIXIR research registry linking maternal and child physical and mental health data with existing research databases.
- To develop a linked bioresource from routine clinical samples.
- To establish collaboration and training amongst the partnership, effective dissemination amongst health care professionals and the local community and efficacy of the platform.
- To plan sustainability, and development of an eLIXIR research network.
The eLIXIR partnership will provide a unique research register drawn from an inner-city population which will enable us to explore the ‘life course’ of some of the most common diseases and help scientists and doctors to work out how we may prevent them. This important research register will be used in the following disciplines:
- Women’s health; by enabling investigation of a) relationships between pre-pregnancy physical and mental health, common disorders of pregnancy and pregnancy outcomes b) the long-term consequences of maternal physical and mental health disorders during pregnancy for the mother’s health c) the efficacy of interventions at the population level arising from RCTs eg lifestyle, pharmacological, devices, diagnostics to improve maternal physical and/or mental health in the short and longer term.
- Paediatrics; by enabling investigation of a) relationships between maternal physical and mental health disorders in pregnancy, and longer term consequences for the physical and mental health of the child b) relationships between adverse events and exposures in the fetal and neonatal period and the long term consequences for physical and mental health of the child c) the efficacy of interventions at the population level to reduce the adverse impact of early life events and exposures on the child.
- Mental Health; by enabling investigation of a) interrelationships between physical and mental health disorders during pregnancy and pregnancy outcomes b) relationships between maternal and childhood mental health, and c) associations between mental and physical health in women, and in children.
- Implementation Science and Public Health; by enabling evaluation of new pathways of care/guideline recommendations to improve maternal and or child physical and/or mental health, and determination of associated health care costs.
- Scientists in clinical research; through methodological approaches including the study of the epigenome, the metabolome and the microbiome in pregnancy and the early post partum period to determine the mechanistic bases for the above relationships and interactions.
The data will be suitable for sharing between UK and overseas academics. Researchers or research organisations will apply through a formal application process to use the samples and clinical data. Each individual study will submit an application on an eLIXIR Research Request Form for access to samples and/or data. The application will be submitted to an appointed Access Committee who will decide on the scientific merit of the study and review any potential overlap with existing agreements. Applications will be considered from academic and, potentially, commercial bodies, all of which must be for bona fide research or for educational purposes.