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Describing data captured in the LifeCourse platform using a standardised terminology

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The LifeCourse website provides a bird’s eye view of what data has been collected across our cohorts. Measures used within each study wave are described by a common set of terms that capture the constructs assessed, which are then broadly summarised into a smaller number of domains. This enables easy and intuitive browsing and searching. Historically, LifeCourse has used an in-house developed set of terms and domain groupings to describe measures. This approach was flexible and allowed data custodians to describe data in a way that they preferred. However, with the scale that the platform has grown to, this approach is no longer tenable. Of particular concern is a lack of consistency, with the same measures described using different terms between studies. Standardising the way we describe and organise data captured across LifeCourse cohorts will allow us to achieve a more streamlined, consistent, and intuitive format for browsing and searching of cohort data elements. A vital first step is to standardise the LifeCourse terminology itself – the set of terms and groupings of these terms that are used to describe and organise the data. This is the focus of this report.

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Royal Children's Hospital Foundation

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