Babies are very sensitive to external influences during development, from when they are a conceived, through to when they are a born.
Throughout development, children’s health is affected by their mother’s health, lifestyle, physical environment, medication. Children can also be affected by complications during birth, or if they are born early.
We also know that if a mother has complications in pregnancy, that she herself may have an increased risk of a range of conditions such as cardiovascular disease, diabetes or mental health problems.
The eLIXIR (early-LIfe data cross-LInkage in Research) study has been set up so that we can find out more about how this occurs, with the long term aim of reducing the risk of health problems for both mothers and children.
Aims of the eLIXIR Study
eLIXIR aims to combine information from health records and blood samples from mothers and children from a large population in an area of south London. This new and important resource will help us explore the ‘life course’ of some of the most common diseases, and help scientists and doctors understand more about disease and the processes leading up to disease. If we can understand this, we can develop strategies or ways to prevent disease.
There are four 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.
Components of the eLIXIR Study
There are two components to the eLIXIR study:
Data linkage: In order to look after you properly, doctors and health care workers record information about your health in your health records. In England, routine mother, baby and child health records are kept in many different places. Mother’s, babies’ and children’s records are not routinely linked to each other. The eLIXIR study has developed a way to pull these data together and anonymise them for use in research so that researchers won’t be able to identify individuals. We will link health information from mothers and children. Eventually this will also link to the blood samples stored in the biobank. This method has been 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/.
If you do not want your information included, please contact: firstname.lastname@example.org or call 0207 188 3641 or write to our research midwives: Dr Annette Briley and/ or Claire Singh, Department of Women and Children’s Health, 10th Floor, North Wing, St Thomas Hospital, London SE1 7EH
Biobank: eLIXIR will collect routine blood samples from mothers and their babies to store in a sample bank. We will ask permission to collect an extra sample of blood from pregnant women when they attend for antenatal care at Guys and St Thomas’ NHS Foundation Trust. Surplus blood from routine samples from infants admitted to neonatal intensive care unit (NICU) will be collected. In the community setting, and in NICU, extra blood will be collected using a Guthrie card from infants as part of the routine heel prick test.
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.
The eLIXIR partnership includes members from:
- King’s College London Faculty of Life Sciences and Medicine.
- King’s College London Institute of Psychiatry, Psychology and Neurosciences (IoPPN).
The Principal Investigator of the eLIXIR study is Professor Lucilla Poston, Head of the School of Life Course Sciences, Department of Women and Children’s Health.
Co- Investigators include:
- Professor David Edwards, Department of Women and Children’s Health
- Professor Robert Stewart, Department of Psychological Medicine
- Professor Louise Howard, Department of Health Service and Population Research
- Dr Mark Ashworth, Department of Health and Social Care Research
- Professor Jane Sandall, Department of Women and Children’s Health
- Professor Francesca Happe, Department of Social Genetic & Developmental Psychiatry
- Professor Tim Spector, Department of Genetics and Molecular Medicine
- Professor Andrew Shennan, Department of Women and Children’s Health
- Professor Seeromanie Harding, Department of Diabetes & Nutritional Sciences
- Professor Anne Greenough, Department of Paediatrics
- Dr Ingrid Wolfe, Department of Primary Care & Public Health Sciences