Evidence · Research paper
Data Collection and Harmonization in Preterm Respiratory Research: Recommendations and Insights From PELICAN.
- Bronchopulmonary dysplasia
- Medical
- Neurodevelopmental follow-up
- Respiratory
Summary
Describes the PELICAN network, a European Respiratory Society Clinical Research Collaboration building a harmonised global repository of demographic, clinical and lung function data on individuals born preterm. Datasets were identified through systematic literature reviews, and a steering committee undertook consensus-based variable selection and data harmonisation. The repository currently includes 20 datasets from 14 countries covering 3,388 individuals, with most of 142 variables fully or partially harmonised. The paper discusses harmonisation challenges and may inform a future core outcome set for long-term respiratory outcomes after preterm birth.
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- Open (Creative Commons)
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