Abstract
BackgroundThe small sample sizes available within many very preterm (VPT) longitudinal birth cohort studies mean that it is often necessary to combine and harmonise data from individual studies to increase statistical power, especially for studying rare outcomes. Curating and mapping data is a vital first step in the process of data harmonisation. To facilitate data mapping and harmonisation across VPT birth cohort studies, we developed a custom classification system as part of the Research on European Children and Adults born Preterm (RECAP Preterm) project in order to increase the scope and generalisability of research and the evaluation of outcomes across the lifespan for individuals born VPT.MethodsThe multidisciplinary consortium of expert clinicians and researchers who made up the RECAP Preterm project participated in a four-phase consultation process via email questionnaire to develop a topic-specific classification system. Descriptive analyses were calculated after each questionnaire round to provide pre- and post- ratings to assess levels of agreement with the classification system as it developed. Amendments and refinements were made to the classification system after each round.ResultsExpert input from 23 clinicians and researchers from the RECAP Preterm project aided development of the classification system’s topic content, refining it from 10 modules, 48 themes and 197 domains to 14 modules, 93 themes and 345 domains. Supplementary classifications for target, source, mode and instrument were also developed to capture additional variable-level information. Over 22,000 individual data variables relating to VPT birth outcomes have been mapped to the classification system to date to facilitate data harmonisation. This will continue to increase as retrospective data items are mapped and harmonised variables are created.ConclusionsThis bespoke preterm birth classification system is a fundamental component of the RECAP Preterm project’s web-based interactive platform. It is freely available for use worldwide by those interested in research into the long term impact of VPT birth. It can also be used to inform the development of future cohort studies.
Highlights
The small sample sizes available within many very preterm (VPT) longitudinal birth cohort studies mean that it is often necessary to combine and harmonise data from individual studies to increase statistical power, especially for studying rare outcomes
The classification system will continue to develop as harmonised variables are created and as new cohort data collections join the RECAP Preterm platform
This paper describes the development and use of the RECAP Preterm classification system as a fundamental component of the RECAP Preterm platform to aid data harmonisation and inform data collections for future VPT birth cohort studies
Summary
The small sample sizes available within many very preterm (VPT) longitudinal birth cohort studies mean that it is often necessary to combine and harmonise data from individual studies to increase statistical power, especially for studying rare outcomes. Adverse outcomes include an increased risk of cerebral palsy, sensory impairments, respiratory problems, impaired motor function, cognitive and attention deficits, social-emotional problems and psychiatric disorders, compared with birth at term (37–42 weeks’ gestation) [3, 4]. Given the relatively small numbers of infants born VPT, individual cohort studies often have insufficient sample sizes for studying rare outcomes, and are time and place specific, with differing health, education and social welfare systems across countries. These limit the generalisability of individual study findings
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