eLIXIR, Early Lifecourse data Cross-LInkage in Research; a Multidisciplinary Partnership

The developing embryo, fetus and newborn child are very sensitive to change in the surrounding environment, whether this arises from problems with the mother's health, the placenta not working properly, complications during birth, or as consequence of being born too early. Adversity in these periods of developmental vulnerability can have persistent effects on the long term health of the child, including physical and mental health disorders. We also know that if a mother has complications in pregnancy, that she may suffer from increased risk of ill-heath in later life, for example cardiovascular disease, diabetes or mental health problems. To reduce the risk of these diseases in the child and in the mother, we need to know more about the processes leading up to them. One approach is to capture the information from hospital and general practice health care records as the child grows up, or as the mother gets older, and through the study of this data and routinely collected blood samples, work out when and why the disorders happen. When we know this, we shall be able to work out how to prevent them. In England routine health records are held in different computer systems and are not easy to assemble. Our partnership, the eLIXIR partnership of doctors, scientists and IT specialists has developed a way to put all this data together and to collect it continuously. We shall start doing this in a large population from a deprived area of South London, where health is poor compared to other areas of England. When we have shown this system works, we plan to extend the study to a much bigger population in London and elsewhere. This new and important research resource will help us 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 multidisciplinary academic Partnership (eLIXIR, early-LIfe data cross-LInkage in Research) 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. 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), 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. 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 understanding the early life origins of disease, and to inform future intervention strategies. Whilst the technical feasibility and necessary permissions for data linkage have been established for similar purposes by our partners in mental health, the first stage of this project will be the acquisition of the necessary ethical and legal permissions for use of the de-identified patient data from each of the component databases for research purposes. This will involve extensive consultation with patients and the public. The sample collection will require 'consent to contact' to be established. These procedures and permissions will be facilitated by an accredited data 'Safe Haven'. Once completed and data linkages established, a pilot study will be undertaken before the resource is made available to the wider UK academic community.

The development of an early life course register comprising routine clinical data from mother and children, with links to research databases and a bioresource will be of potential benefit to many different academic fields. These include the many disciplines represented by the partnership including obstetrics, paediatrics, psychology, psychiatry, social science, implementation science, public health and primary care. The generation of 'big data' from the research platform will benefit a raft of different scientists including bioinformaticians, geneticists and those working in the field of, epigenetics, metabolomics and the microbiome. Neuroscientists will also gain from elucidation of early developmental pathways in the brain and associations with later mental and physical health. There will inevitably be considerable interest from pharma and diagnostic companies whose level of involvement will be determined during the public engagement programme. The potential of the platform to assess efficacy of health care pathways will interest policy makers in the field of Public Health. The understanding of the early life determinants of mental and physical health will be of interest to the Department of Health, and in particular to Dame Sally Davies, Chief Medical Officer whose 2014 report focussed on women's health and the life course. Development of novel interventions, testing of their efficacy at the population level, and health economic evaluation will be of benefit to NICE, and other opinion leaders including the Royal Colleges in their development of guidelines. The patient support groups and the many charities with which the members of the partnership work closely, will benefit from evidenced based advice for dissemination to their specific sub group of the population with whom they interact. Of paramount interest to the partnership is the impact and benefit to the South London population from whose data the research outputs will be derived.