The Congenital Diaphragmatic Hernia Study Group registry update

Area of Science:

• Pediatric Surgery
• Clinical Research
• Data Science

Background:

• The Congenital Diaphragmatic Hernia Study Group (CDHSG) was established in 1995 as an international consortium.
• It facilitates prospective data collection from live-born congenital diaphragmatic hernia (CDH) patients managed at participating centers.
• This collaborative effort aims to build a comprehensive registry for clinical research and outcome monitoring.

Purpose of the Study:

• To review the formation, structure, and function of the CDHSG and its registry.
• To highlight the evolution of data collection practices within the consortium.
• To summarize key research findings and reports generated by the CDHSG, particularly post-2008.

Main Methods:

• Prospective data collection from live-born CDH patients across multiple international centers.
• Voluntary data contribution and compilation into a centralized registry.
• Utilization of the registry data by participating centers for clinical question-answering and outcome monitoring.

Main Results:

• The CDHSG has involved 112 centers, with 66 currently active across 13 countries.
• Data on over 8,000 children with CDH have been collected since the registry's inception.
• 35 manuscripts have been published utilizing the CDHSG registry data.

Conclusions:

• International multicenter consortiums like the CDHSG are crucial for studying rare and complex diseases such as CDH.
• The CDHSG provides a robust platform for generating evidence-based hypotheses and conclusions in pediatric surgery.
• Continued data collection and analysis are essential for advancing the understanding and management of CDH.