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Common data standards: Seeing the full picture

Data is at its most powerful when it is joined up. This is particularly important in paediatrics as often
children have rare diseases, so it is only by joining up cohorts across the world that it is possible to spot patterns in symptoms, diagnosis and treatment outcomes.
Joining up data was extremely valuable during the COVID-19 pandemic when clinicians and researchers had to rapidly characterise the novel virus to find out how to diagnose and treat people. Especially complications in children which were rare events. This was when 4CE stepped in.
4CE is an international consortium for studies of the COVID-19 pandemic using electronic health record data. This is done in a safe and secure way, where patient data remain within hospital boundaries and only anonymised aggregate data and results are shared centrally for further analysis.
By using the DRE, we were able to extract and analyse the required GOSH patient data locally. The aggregate data from 27 hospitals across six countries were then joined and analysed together. The study analysed over 27,000 laboratory values for 16 different tests which allowed identification of abnormalities that could help characterise severity and inform treatment of COVID-19 in children. The study identified complications associated with COVID-19 infection in children and young people so that clinicians could better plan for their care and inform families about possible outcomes.
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Our work to join up paediatric data securely and effectively for research and innovation continues. Find out more in the stories below.