Development of a data classification system for preterm birth cohort studies: the RECAP Preterm project

Area of Science:

• Perinatal Epidemiology
• Biostatistics
• Data Science

Background:

• Small sample sizes in very preterm (VPT) birth cohort studies necessitate data harmonization for increased statistical power, especially for rare outcomes.
• Data curation and mapping are crucial initial steps for effective data harmonization across studies.
• The Research on European Children and Adults born Preterm (RECAP Preterm) project aims to improve research scope and generalizability for VPT individuals.

Purpose of the Study:

• To develop a custom classification system to facilitate data mapping and harmonization across VPT birth cohort studies.
• To enhance the scope and generalizability of research on VPT individuals.
• To improve the evaluation of lifespan outcomes for individuals born VPT.

Main Methods:

• A multidisciplinary consortium of 23 expert clinicians and researchers participated in a four-phase email questionnaire consultation process.
• Descriptive analyses were used to assess agreement levels with the developing classification system after each round.
• Amendments and refinements were made iteratively based on expert feedback.

Main Results:

• The classification system was refined 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 developed.
• Over 22,000 data variables related to VPT birth outcomes have been mapped to the system, with ongoing expansion.

Conclusions:

• The bespoke preterm birth classification system is a key component of the RECAP Preterm project's web platform.
• The system is freely available globally for research on the long-term impact of VPT birth.
• It can inform the design and development of future cohort studies.